Juvenile Scleroderma

July 31 2023

Hannah Sportiello

sclerounited_ppavrw Issue 2 Dance, Juvenile Scleroderma, Theatre, United States, Wisconsin

Lake Geneva, Wisconsin (United States)

HANNAH SPORTIELLO

Scleroderma Stories Issue 2

Please introduce yourself

I just graduated high school, and I am going to be a freshman at the University of Wisconsin, Milwaukee this year. I’m majoring in acting and sonography. I have a huge family – seven siblings, four of which are married, and six nephews and nieces altogether.

I dedicate most of my time to theater, and I’ve done about 20 productions so far. Other hobbies are playing with my family and hanging out with my friends, but I’m definitely big on productivity, so I like working hard, studying and going through my scripts.

When were you diagnosed with scleroderma?

I was diagnosed when I was seven, which is much younger than the average person. My mother is an OBGYN and a very good doctor; I was so blessed that she noticed all these signs.

She started to notice that I was complaining about the blue hands. She also noticed puffy skin, especially near my hands, which she noted to be strange considering I was seven. At this point, I was still able to function like the rest of the kids; I was still playing quite normally with my siblings and friends.

We had this family friend, who was a doctor, who came over for dinner one night, and he mentioned that, while it was quite rare, I should get tested for the SCL70 antibody; sure enough, the test came back positive.

I then went to South Carolina to see a scleroderma specialist, Dr. Richard Silver, and he was in charge of diagnosing me. If it wasn’t for my mother, I probably wouldn’t be diagnosed to this day and wouldn’t be getting treated until about 25, when most people get diagnosed.

When I first got diagnosed, my parents say that they explained to me, not that I remember, what I have and the possible outcomes. The doctors gave me a year left to live, but I’m not sure that I knew that part exactly. Honestly, what I remember most is being very spoiled that year. I remember my siblings were treating me very well and I had a lot of fun with them. I’d get ice-cream all the time because my family thought I was dying.

How did scleroderma affect you growing up?

As a little kid, my hands would be cold, and that wouldn’t be a big deal, but other kids would poke fun at it. I remember, and this is pretty sad, having to stay inside during recess in the winter and watch all the other kids play outside through the window, just wanting to go out in the snow. Some of my teachers made it fun, and they let me keep a friend inside. At that point, I started to realize that I was different and this is something that’s not going to go away.

It was difficult trying to explain to my teachers that I have a very serious medical condition unlike the “fakers,” the really dramatic students who have all these medical needs. I also had, on the other side, absolute babying, where my teachers would bring it up in front of the whole class and make sure that all these kids know that I’m not allowed to go outside with them.

Many of my classmates and peers treat it like a fake disease. Like if I try to bring it up in conversation in biology class, not in an attention- seeking way, I get many looks. People think I’m faking it and talking about it to get attention. Since scleroderma is an invisible disease, it never gets the same reactions as those for more obvious conditions.

It also affected me and the extracurriculars that I got involved with. I thought I was never able to do track or play soccer or volleyball. I did that for a bit, and I wanted to do it again in high school, but I worried that I wasn’t athletic enough, that I have scleroderma and that I won’t be able to keep up. I definitely feel like I missed out on that, and now, as a runner, I realized that I could have done that. If I had tried, I would have been able to, but I got in my head; I wish I had seen what I see now.

Additionally, all of my biggest physical insecurities are from scleroderma. I grew up with veins around my eyes, and I wanted to rip them out of my face. They drove me crazy, but not so much anymore since I’ve become a lot more confident about these things.

Having transparent skin, which made me look sick all the time, really got to me growing up. People pointing out that my skin is different, and different in an uglier way, is always difficult for a girl growing up. I’d see these girls with flawless tan skin and there I was, white and blue. Now though, I’m a lot more confident about it and it came with a change in physical and mental mindset.

Hannah visiting her Children’s Hospital on her 18th birthday

How does scleroderma affect your life today?

I began treatment so much earlier than everyone else, and because of that, I’m a lot healthier than the average scleroderma patient.

That said, while I look and appear to be very healthy, I do have some drawbacks. For example, all the dance rehearsals are a lot more exhausting for me than for everyone else. I have a lot more pain and other symptoms that go with it, including a vascular disease that I was just diagnosed with this summer. It’s called Venous Insufficiency. It’s not technically related to scleroderma, but because the scleroderma affects my vascular system, the symptoms overlap and become more painful and less manageable without intervention.

The symptoms that I do experience are mainly the Raynaud’s. I take very good care of my skin, so it’s very healthy, but I do notice tightness when other people might not see it. I never was able to keep up as well in dance rehearsals or gym class back in the day, but again, I wasn’t even the worst in the room, so that’s saying something.

It was just little things like that that no one would pick up on if they weren’t aware of my diagnosis.

Every day in rehearsal, I’d have these lead roles where I had to tap dance and do all of that, and I was unable to keep up. I had these huge, ten minute long dance solos to learn, and I’d have to sit out half of it because my feet would swell up so much that I couldn’t even get my shoes on, let alone walk and dance.

Hannah with her best friend from high school

What’s the scariest part about living with scleroderma?

I think there are two parts to that.

I would say not knowing what’s going to happen. We thought we knew exactly what was going to happen, in a way. Everyone else had a year left to live; therefore, I was diagnosed and had a year left to live. That said, everyone else was 25 to middle age, and they didn’t receive the treatment that I have been receiving from such a young age. So, when I get to the age they are, we don’t know if I will be better because of the treatment that I’ve been having for the last 20 years or if I will still be at the same point they are at.

It is scary now knowing your future or how it’ll affect you, your family, and your career.

The other part is not knowing if I can have a family or not. I was always told that I can’t have children with the medications I’m on, which means I’ll either have to go off my medications and have children or never go off my medications and choose not to have children, if I even get to that point, if I’m still alive by then.

If I go off the medications, I don’t know if my scleroderma will be okay and if I’ll be able to go that long without a flare-up, which is unlikely.

Hannah’s family at Christmas

What advice would you give people with scleroderma or other chronic illnesses?

I think the biggest piece of advice that I have is that you have to change your mindset to cooperate with your chronic illness because you might want it to go away, but it’s not going to, no matter how hard you try.

You have to grow with it because you can’t grow without it. You can’t grow ignoring it since it is a part of you now. You can still change and become who you want to be with it.

Be sure to follow us on Instagram and Facebook (@sclerounited) to see more scleroderma warriors’ journeys in our weekly Sclero Sunday series.

Are you a scleroderma warrior? We’d love to interview you for Scleroderma Stories! Please visit tinyurl.com/share-my-sclero-story or email us at contact@sclerounited.us

July 24 2023

Shirley Alvarez

sclerounited_ppavrw Issue 2 Dance, Juvenile Scleroderma, Music

SHIRLEY ALVAREZ

Scleroderma Stories Issue 2

I’m really thankful to do this interview because I’m always a little bit private about my life. Sometimes, when I talk about scleroderma, it really does bring back a lot of memories that can make me a little bit upset. But, I think it’s really nice to reflect and to share my story with others, and to hopefully help somebody that’s going through something, so I’m very grateful for the opportunity.

Please introduce yourself

My full name is Shirley Alvarez, and I am 29 years old. I’m a regular girl trying to make the most out of life. I was diagnosed very early on with scleroderma at the age of 9. I’ve been trying to cope with that and have a creative life, so it’s been a long journey, but I think I’m doing okay overall while trying to make the best of it.

What are you passionate about?

I love music; music is my life. I’ve also always been very passionate about the arts. Before I was diagnosed with scleroderma, I was always a dancer, and I would be dancing day and night. I remember being a kid and wanting to be a dancer, so dancing was a huge part of my life.

After being diagnosed, I couldn’t do it anymore, and I became weaker over time; I couldn’t move my body the same. But, I discovered that there was still a way for me to dance, so even though I’m in a wheelchair, I figured out how to dance and just to start moving again. I found my first love and brought it back into my life, and I can say dancing is a big part of my life and is one of my biggest passions. I also love attending concerts, photography, and being creative when it comes to fashion and creating an outfit.

I’m all over the place. I love filmmaking and making videos. I create a lot of videos, including tributes to my favorite songs. I absolutely love making dancing videos to share with people because I really love to show my joy, and hopefully that can inspire them to feel that joy as well.

I’ve never been a person that was very articulate. I think for me, it was the arts where I communicate best, so when I dance or put on an outfit, I’m making a statement. When I show my photography and my model poses, I’m trying to tell a story; it’s more than a picture. I’m really trying to communicate something. I think it’s also interesting to see how people interpret the concept that I share, and I have overall positive feedback with a few negative ones, but it’s up to them how they want to see it, and I’m okay with that.

Shirley met Tim Burton, whose films help her cope and embrace her imperfection

Do your hobbies help you deal with your scleroderma?

Oh, most definitely. I must be creative and artistic every day, even with the basics like getting ready in the morning and putting on makeup. It’s like your face is almost like a canvas.

Anything that I try to do, I try to just make something creative out of it, and music is a huge part of helping me cope. I can identify with songs with lyrics especially, and if I’m feeling a certain way, while connecting with the music, that really alleviates the soul. So music is definitely the main thing.

I’m also a visionary, so I really do love listening to music and visualizing myself, whether it’s performing or things as such, and then they give me ideas for videos. I’m always just constantly visualizing it; for me, it’s a therapeutic form. It’s been my therapy for as long as I can remember, and I think that’s what helps me continue being sane and accepting and just coping with everything.

It’s nice to have those outlets. I think we all need an outlet. We all need art in our lives to help us express when words fail, but also when there isn’t anybody around that can understand us. I think it’s really important to have some artistic form in your life.

When was your diagnosis, and what symptoms led up to it?

I was diagnosed on September 11th, 2000 after symptoms began to show up in the beginning of 2000 when I was in 5th grade. It started to worsen quickly. I remember traveling to South America with my mom, and after coming back from the trip, I wasn’t the same.

There were symptoms of fatigue. I do recall my parents saying that when I was sitting at the dinner table, I was always sighing, almost like I felt like I was exhausted. My mom always said, “You were always a very energetic child. Why are you looking so tired all the time?”

Another one that I noticed was a skin discoloration. I noticed that my skin was getting darker, and I was developing these dark spots on my joint areas. I remember developing one near my mouth. It happened the same day I was supposed to go to a friend’s party. I just noticed a dark patch near my lip.

Another thing that I noticed was just the weakening. I felt weaker in my legs, so when I was going to school and I was trying to climb up the stairs, I was having a really hard time. I really had to fake it and pretend that I was okay, but I think a lot of my friends noticed. They started carrying my backpack because they wanted to alleviate some of the weight that I was carrying, and that helped.

So I do remember all of those things before the actual diagnosis. I also remember getting a lot of nosebleeds in the mornings, and I was waking up with a swollen face. It looked like what they call the “moon face.” I do remember waking up and having a swollen face and also swollen hands.

I was scared to tell someone. I figured it was temporary; that it was going to go away soon. And I remember relatives just making it seem like, “Oh, maybe it’s like an allergy.”

I don’t recall, but one relative made it seem like it was just something that was going to pass. She offered to give me some hand cream that could help, and I took it, but no, I started to realize that it wasn’t getting any better. So for me, it was more I thought it was gonna go away soon. That’s why I didn’t tell anybody.

To what extent did you understand what scleroderma actually was at the time?

I had no idea what it was. I remember going into the doctor’s office, and I wasn’t in the room when he told my mom the diagnosis. I saw my mother just crying hysterically, like she couldn’t even stand. She really had to hold on to the wall because it was like the worst news of her life. I just remember seeing my mom crying, and I was like, “What’s going on? What’s going to happen to me?”

I really did not understand the nature of the disease just yet. It took some time to understand what was happening. But overall, I knew that it has to do with the skin. I felt the tightness and muscle aches, so that was a major aspect of the disease. I think it was the doctors who taught me more about it. I do remember looking it up, but to be honest with you, I didn’t want to read into it too much.

I didn’t want to have a lot of knowledge in my mind because I didn’t want to think about it and then cause my own symptoms by overthinking. I decided to just stay as distant as possible. I knew the basics. I knew the skin was involved, but I didn’t want to know how it could progress. I didn’t really want to know if it was fatal or not.

You know, there’s some things that I just didn’t want to know because I just didn’t want to have that in my conscious, and that’s what I did, at least when I was very young.

As you start getting older, you become more knowledgeable; you become more aware, and things have changed over time. When I was younger, I was still so young that I was just more preoccupied about just going, you know, one day at a time.

Shirley with her sister alongside Johnny Depp in 2016

What symptoms have you developed since diagnosis?

I have the crest syndrome type of scleroderma. That includes the calcinosis, the Raynaud’s, the esophagus, and the dilated blood vessels that are on my face and my body. My fingers also became quite curved and claw-like. Losing a lot of weight, for me, has been the most difficult part of the disease and the bone and muscle mass that I lost. I think, for me, that’s what hit the hardest.

Another one that’s quite challenging is the dilated blood vessels that are noticeable on my face. Sometimes, honestly, I don’t want to wear makeup. And if I go out, people are like, “Oh my gosh, is that a rash, like is it contagious?” I just really can’t step out of the house without makeup, and of course family and friends understand it when I’m home. They don’t mind, you know. My family is used to it, and they don’t even notice it.

However, personally, that’s something that I still do notice, and it still bothers me until this day even though I try to be very positive, and I’ve created a persona out of my disease and I wear makeup. But sometimes, I really wish that I looked better when I’m natural – when I don’t have makeup on. But, it’s not everything. Looks are not everything.

How did these changes affect your ability to interact with your family, friends, school, and job?

When I was first diagnosed, I’d have to say my extended family wasn’t there. I actually felt like we were alone. I did feel like I had less interaction with family. People just seemed to distance themselves or didn’t know how to deal with it, and so it was really just myself and my immediate family: my parents, my sister, and my grandmother.

It changed in the sense of not having as much interactions with family and friends. I didn’t see friends for many years. I returned to my school, and I basically was living and hiding the first couple years. Also because I was just going to the hospital and getting treatments all the time, I really didn’t have time to see a lot of people anyway. I was just very much to myself, and it was just basically myself and my immediate family.

I was very lucky to go to a school that was for children with physical disabilities. It was a school that was very accessible and very accommodating to our needs. Fortunately, I was in an environment where I was with other kids who were dealing with similar situations. I was very lucky to be in that school, and that helped me so much. I was very much influenced by the children and how they were coping with their lives. That inspired me to have a better and more positive outlook.

As I got older, I didn’t think that I would be able to go to college, especially with relying on so many people and not really being as independent. Somehow, I made it work. I went for a semester, and then I switched to online classes, which was a huge advantage because that allowed me to work at my own pace and allowed me to travel and explore places on my own without having the school.

I was really able to do my work when I needed to and have the other time for socializing or traveling. I made my city my campus. I didn’t want to be inside a building. And so I accomplished that with the help of my parents and my aides at the time. I graduated college, and then the next goal was “well, will I be able to get a job?”

Luckily, I found something after many interviews. I had so many rejections, but I never stopped. I never stopped trying, and something came out of it. It took me about six months after graduation to land a temporary position. I really had to prove myself to the organization that I was able to do the job. After being there for a few months, I was hired permanently.

So it’s been challenging – very scary. Sometimes, the fear is what makes it worse. But once you’re out there, it’s not as bad as you think it is. I learned that, and I’m trying not to be fearful anymore and trying just really hope for the best.

Did your friends understand what you were going through?

I mean, you know, it was quite visible. I think we all, to a certain degree, understood what it’s like to be in a wheelchair and what it’s like when you need to go to the hospital to get treatment.

At the time, when it started, I was the only girl with scleroderma. So, I really did have to, you know, tell people about it. They had to be educated and understand what it was about. So yeah, it took some time for them to really understand it. But you know, it’s not something that I was focused on.

Everybody just treated me very well, and my nurses took care of me very well. It was a very nice environment to be in, and I felt that they did their best to accommodate for me. As long as I communicated my needs, they were accommodated.

Shirley met her idol, Shakira, in September 2019

Is there a certain mindset with which you approach your scleroderma?

For me, this has been an absolute nightmare. That is the truth. I don’t sugarcoat it. It is an absolute nightmare. It’s been a nightmare everyday since day one, but I’ve also learned to see and acknowledge the nightmare as a blessing. So I always say I’ve been blessed with a nightmare. That is my life motto.

Without this nightmare, I wouldn’t have really realized my own strength. I wouldn’t have developed my sense of compassion and understanding. I think it’s also helped me be creative. I’ve been able to draw a lot of inspiration from my own life and put it into my work, film, photography, passion, and aesthetic. I feel that it’s been a blessing, and I’ve had experiences that many others haven’t. I embrace the unique experiences scleroderma has given me.

I realize that sometimes there may be a lot of darkness, around me, but I’m always like that light. I am that candle that lights up the darkness. I noticed that you are the light within, and I think that’s how I just been able to cope with the reality.

Is there anything in specific that gets you through the difficult times?

Music helps me get through the difficult times, but really just finding an outlet. If I’m feeling a certain way, I will put in and manifest all that energy into something, whether it’s dressing up or going to have a photoshoot.

And I’m really going to try to showcase what I’m feeling. I use color tones. If I’m feeling angry, you might see a red photoshoot. If I’m not feeling so positive, you’ll probably see some green. I also use a lot of black in my photography.

I do try to embrace the gothic aesthetic in my work and in my life, and that’s really helped me so much.

Do you have any goals or dreams for the future?

For my own future, I want to just be able to continue being creative. I go as @thetragicdoll on Instagram.

That’s an extension of myself, a character that I built, and that’s the way that I express myself. That is the way that I’m representing myself to the world: as a tragic doll that has different elements; there’s light and darkness as well as creepy and cute. I can play around with all these elements. That’s something I want to continue growing, inspiring other people to share through my story and through @thetragicdoll.

I also ideally would love to just be in a movie. I think a film would be amazing. I’m thinking about maybe directing a documentary one day or directing my own film one day. I also would love to be a director for music videos, since music and dancing are my passions. I absolutely love editing videos. I always wanted to create a story or direct a video that will give a song justice. I’m very much into the visuals of musical videos. That is another goal that I would like to achieve, whether it is creating my own production company or something else. That’s something that I am striving for.

And other than that, just to continue traveling and exploring the world and exploring myself. My family is very important, so to just continue being with them and experiencing life with them is also another one of my goals. I have a little brother who was just recently born, so he’s been my life right now. I’m very excited to see him for a while.

Shirley’s first time in Rome, Italy

What medications have you taken and treatments have you done?

The only treatment I ever had was cytoxan, and that’s the only one I took when I was young, starting the year that I was first diagnosed. I did the cytoxan treatment until I was about 14. After five years of that treatment, I haven’t had a treatment since. I do take one medication for my heart called Cardizem. That’s it.

I know I’ve stopped responding to treatment. I don’t take medications. My doctors do not want me to be like a guinea pig. I don’t want to take any chances or do any type of experiment. I’ve been stable so far, and I haven’t really gotten worse. They haven’t tried to give me anything, which could possibly make something else worse. So it kind of left me at that.

Do you have lot of medical expenses?

Just when I see my doctors on a regular basis. It’s just a copay, but no, I don’t. I did in the beginning, yes. But now, I really don’t have any expenses.

Unfortunately, I have heard of treatments such as stem cell that could work and possible help, but those will cost a lot of money. Who knows what will happen when I do need it? Right now, I’m just taking it one day at a time.

Have you made any special adjustments for the coronavirus?

I’ve been trapped in my house for months, but I’m okay. I’ve been thriving in this lockdown because I am always on the run. I am always going somewhere and doing multiple things a day. I’m non-stop.I started to feel like that was contributing to my health. As much as music, live concerts, working, and all that is great and productive, I don’t get a break.

Being at home, I’ve been dedicating more time to eating, exercising, and resting. This quarantine has been another blessing in disguise. It’s improved my quality of life.

I’m very afraid to go out. I’m taking it very seriously. I love life so much, and I want to have as long a life as possible. So, if I need to stay home and protect myself, it’s worth it.

I want to just be around for longer and enjoy the beauties of life. And so, I’m okay with being at home. I think it’s a good time to focus on myself and to grow and to be productive creatively and I’m doing so much right now in quarantine.

Are you in any social groups or online scleroderma communities?

No, I’m not, but I do stay in touch with a lot of people with scleroderma around the world that I’ve met through Instagram and Facebook. I do attend some of the scleroderma fundraisers when I can. A lot of people that I’ve met have been online, and I stay in touch with them.

It’s been really nice to connect and relate because for a lot of years, I thought I was the only person going through this. I felt like I was the only one. It was nice to know these men and women who understood what I’m going through. Some of them recently diagnosed, some have had it for many years – 20 years plus.

And so I’ve been able to connect with people that have been diagnosed. They’ve called me and messaged me to know what advice can give and how I cope. It’s been very fulfilling.

What advice do you have for people with scleroderma or other chronic illnesses?

Always try to stay positive. My advice is to be positive and not stress out. When we’re stressed, our skin can get tighter. It makes everything tighter. And so, I’m trying to have a very peaceful life, staying positive and finding new outlets to express myself. I think that’s the best advice I can give: be as positive and optimistic as you can. However, I know days are rough. It’s okay to be angry and upset. It’s okay to question it, saying, “why me?”

I also agree that you shouldn’t repress what you feel. You should let it out. If you want to cry then cry. Let all those feelings out. Let all those emotions out. It’s very healing, and it’s very helpful. Much better than accumulating. That would be my best advice.

Next, meet…

Hannah Sportiello

Wisconsin, USA

Read Hannah's Story

Scleroderma Stories Issue 2

What led to your diagnosis?

There were no specific events, but in March of 2018, I started experiencing Raynaud’s (decreased blood flow to the hands). By June, my hands couldn’t bend. I was diagnosed on July 12, 2018. Before my diagnosis, I had never heard of scleroderma. I was 12 at the time. After I got diagnosed, I thought, “wow, what will happen down the road?” Since then, I have developed low functioning lungs and acid reflux. My esophagus is also affected by scleroderma.

Jessie posing for a 50’s and 60’s-themed photoshoot with her family

Have you met other kids with scleroderma?

Yes, I have met other kids with scleroderma. I met them at the KidsGetScleroderma2 conference. Through messaging, I still keep in touch with the two girls that I met. When I met them, I felt like I finally had friends that knew how I felt. They make me feel better.

How has scleroderma changed the way you live?

It changed the way I live because I can’t do many of the things my friends do at school, like run cross country or run as much in gym class. When I was in 6th grade, I planned on doing cross country the following year. However, by the time I was in 7th grade, scleroderma started affecting my lungs, so I was told I wouldn’t be able to run cross country.

Luckily, my school friends and classmates understand my scleroderma.

Jessie’s 16-year-old brother, her younger brother and his service dog, and Jessie

Has scleroderma affected your participation in school?

Yes, my teachers had to lower the amount of homework they assign me because I can’t take my ADHD medications. I had to stop taking my ADHD medications because I was losing too much weight. I only weighed 76 pounds at the time, and I started taking steroids to help me gain weight.

What is the worst part of living with scleroderma?

I think the worst part of having scleroderma is taking a lot of medicine.

I take 40mg omeprazole twice a day, three pills of 500mg mycophenolate, and three pills of 3mg prednisone. I also take a stool softener and bone health pills. The omeprazole and mycophenolate get stuck in my throat, and the prednisone pills leave a disgusting taste in my throat and mouth when I take them since I have to let them dissolve. I also don’t like the prednisone, and I didn’t like getting a tube up my nose.

What activities, hobbies, or interests do you enjoy?

I do dance and cheerleading. I’ve been dancing since I was 4, and I just made the cheerleading squad this year, so this is my first year cheering. I can only be a winter cheerleader because they cheer inside, but my squad members and coach understand why. My dance teacher also adapts the dances to what I can do. For example, I do jazz dancing, and since I can’t do the splits, my teacher puts in different stretches that I can do.

What helps you get through hard times?

My family does. I have 4 brothers, 1 sister and 3 nephews. Jordan is 30 and lives in Pittsburgh with my nephews (Shawn, Jonah and Oliver) and my sister-in-law, Jen. Luke is 27 and lives in Arizona. Gabrielle is 25 and lives with us, and so do my other two other brothers: Koda, who is 16, and Liam, who is 10. When I get upset about not being normal, they comfort me.

Jessie and her 16-year-old brother, Koda

Jessie with her 25-year-old sister, Gabrielle

Jessie and her 27-year-old brother, Luke

Could you please tell us about your awareness and fundraising efforts?

Could you please tell us about your awareness and fundraising efforts?

I did a speech in Long Island New York, and I’ve sold bracelets as a fundraiser. For the speech, we went in June of 2019. I was the main speaker. It was for a conference called Cocktails and Canvas, and it was hosted by A Lasting Mark Foundation.

Before the speech, I was really nervous to talk in front of all those people, but afterwards, I was really proud of myself. I wanted to give the speech to raise awareness about scleroderma. The venue was very pretty, and the experience was amazing.

The fundraiser where I sold bracelets was on June 25th, 2019. My friends and family helped me sell bracelets. We used some money to help my friend, Addy. A Lasting Mark matched the amount of donations we got. We raised around one thousand dollars for Addy because she hasn’t seen a specialist for her disease.

Jessie at the Cocktails and Canvas event

Jessie, her doctor (Dr. Torok), and Addy

Do you have any advice for any other people or kids with scleroderma?

I try not to let scleroderma stop me from doing what I want to do. I hope that I get better, and that a cure for scleroderma is found one day. My advice for other kids with scleroderma is that you need to stay strong and believe that you’ll get better. You also need to fight.

“I use the unicorn as my symbol because it reminds me to not give up and to stay strong.”

A Message From Tammy Clark, Jessie’s Mom

Two years ago, while taking a walk, we found the first signs of scleroderma. After that, there were many tests, with long days and sleepless nights. We received a diagnosis after 17 days of testing. Some days, it is hard to believe that it has already been two years, and other days, I wonder how it has only been two years. There have been many changes – this is a new normal, but I’m still trying to keep things as normal as possible for everyone.

There is absolutely no one that can prepare you for the words you hear when your child is diagnosed with a disease. My sweet Jessie has been amazing through it all. There are days she is your average teenager, and days when she is emotional and asks why she can’t just be normal. Over these past two years she has used her voice to not only help raise money for scleroderma research and to help other children with scleroderma, but also to raise awareness.

Some days, the challenges she faces because of the disease are more difficult than others, but she still presses on. I have heard so often that Jessie doesn’t look sick. I guess she doesn’t to the average person. I have looked back at pictures of her two years ago, and now I can see the signs of scleroderma on her face. The most obvious sign of the disease is in her hands and feet. However, there are also many things going on inside of her body that can’t be seen, both physically and mentally. As her mother, I would do anything in my power to take this from her, just as any mother would, so knowing that I can’t is a very helpless feeling. I want Jessie to have and do everything her five siblings have been or will be able to do.

Our last visit to the Children’s Hospital was around three weeks ago. The current situation with coronavirus has had me a little on edge for Jessie. At our last visit, Jessie’s blood work showed that her numbers have not gotten better or worse but have pretty much stayed the same. We are going to be weaning her off the steroids, but because she was on them for two years, this will take some time. The steroids have helped Jessie gain weight and eat. In the two years she has been on them she gained 45 pounds, which she really needed to do. Her lung tests will be done again in the fall, but we are predicting that the results will once again be the same (low functioning lungs). At the eye doctor’s office, we found that her left eye is in poor condition, so she is basically seeing with only one eye. Fortunately, there seems to be an increase in the mobility of her ankles and knees. Her hands and toes are no better, and at this point probably will never regain any more mobility. As for the rest of her joints, the disease is present in all of them, and they remain the same.

After a plateau in growth for quite a while, she is growing again and has managed to pass up her mom in height, and she is quite proud of this. I was reminded once again just how quickly things can change when you have a sick child.

Today, I am thankful that things are as good as they are. Yes, they could be better, but they could be so much worse. If you are looking for a good cause to donate to please consider donating to the Scleroderma Foundation. Please help us find a cure and possibly a way to prevent scleroderma all together.

Jessie’s mom and dad

July 24 2023

Macy Phillips

sclerounited_ppavrw Issue 2 Arts, Juvenile Scleroderma, Kansas, Pets

Kansas (United States)

MACY PHILLIPS

Scleroderma Stories Issue 2

Please tell us a little about yourself

My name is Macy Phillips, and I am 19 years old. I love to write (I actually have a blog), scrapbook, and journal. I live in Kansas with my boyfriend of almost three years, and I have two dogs named Chi Chi and Kane. My family and my partner are important to me.

Kane (left) and Chi-Chi (right), Macy’s two “fur children”

What led to your scleroderma diagnosis?

I was diagnosed with systemic scleroderma at a very young age. I was playing outside, and my mom noticed that my fingers, lips, and toes were turning blue. My mom quickly took me to our neighbor who was a nurse, and she recommended that we should see a specialist. They diagnosed me with Raynaud’s, and I was positive for scleroderma.

When I was young, what I understood about scleroderma was that I had to be cautious of the cold, and I had a disease which would last my entire life. I believe about a year passed between my initial Raynaud’s diagnosis and the positive result for scleroderma. I was diagnosed at seven and went for testing when I was 6.

I was around 12 when a spot started to harden on my back. I started to experience joint and muscle pain, issues with my stomach, chronic fatigue, and inflammation in my limbs, and acid reflux.

Macy with her mom, dad, and two of her three younger brothers celebrating her 18th birthday

How did this change your ability to interact with friends or attend school?

When I was young, I couldn’t play outside in the cold months with my peers due to my Raynaud’s. I fell behind, and many of my friends stopped talking to me. I was in pain and felt exhausted all the time, which then prevented me from attending school. I also experienced symptoms such as nausea and headaches. I had a tough time at school. Many of my teachers though I skipped and my school made it very hard for me to work.

I had a 504 plan but unfortunately none of my teachers followed it. My peers and teachers bullied me. I stopped going to school at 16 and pulled myself out with my parents permission. I have tried to go through a GED program, but I have not finished yet nor gone back since. I was recently diagnosed with pretty severe ADHD, which explains my hardships with learning new materials.

Have you been able to work?

I have only been able to work part time, but currently I cannot work at all. Working has worsened my scleroderma symptoms. I worked in retail, and I had to get a doctor note to prevent getting reprimanded for calling in sick. Some of my bosses were understanding of my limitations while others weren’t.

Has your difficulty with working or medical expenses caused any financial hardship for you or your family?

When I was first diagnosed, my mom was about $200,000 in debt because of my testing. A month after I turned 18, I had to go to the ER, and our insurance was cut off, so I was immediately $1,500 dollars in debt. Being sick is a financial burden, and coming from a low-income family, I heavily rely on state insurance. I still pay out of pocket because they won’t cover my pain medication.

Financially, I worry about being unable to afford life saving care, being unable to get medications that are essential, or being unable to afford doctors appointments for my check ups. My family hasn’t made any adjustments to prepare for potential future medical expenses. To be totally honest, we financially never have been able to do so. My boyfriend and I are moving into a new place and are looking at options of career pathways and buying a home.

Macy and her mom

How much medicine do you take, and how often do you go to the doctor’s?

At one point I was taking a lot of medications, now I only take about three medications. And I visit my specialist once or twice a year. I am currently in a remission state, but before being in a remission state, I went every three months for check ups and labs.

Was there a certain point where you started to actively learn about scleroderma?

When I was about 14 years old, I started learning more about scleroderma. I became active in the community at 16 and started joining Facebook groups designated for connecting with others with scleroderma. It helped me realize that younger adults with scleroderma seem to be a rarity and inspired me to make my own blog.

Could you please tell us a little more about your blog?

I have been blogging on and off for about 4 years. Blogging has helped me immensely. It makes me feel less alone. I blog about myself, my struggle, and accomplishments with chronic illnesses. I also like to make informational pieces for other people. For example, I wrote a blog about coping mechanisms. I have also written a blog about how to tell your job about your illness.

I’ve been working on a new blog, and it is called Living Compromised. And I will be publishing it this upcoming Sunday.

What is the hardest part of living with scleroderma?

The hardest part with living scleroderma is that it could get worse any time. My boyfriend and my dogs have helped me to get through hard times.

When I was young, my mom helped a lot. She never let me feel anything but normal. If I could not have ice cream, she didn’t. If I could not go outside, we played inside. Even If I had to wear a mask, she even wore one.

Macy with her boyfriend of three years

Have you ever met any other children with scleroderma?

I met with Wyatt Wright in 2015. His mom runs his Facebook page, Wyatt the Warrior. My dad did a car show and decided to dedicate the funds raised to The Scleroderma Foundation. Both of us met there with our families. Even though he is a couple years younger than me, I was able to connect with him and felt less alone.

Macy with her dad

What are your goals or dreams for the future?

My dream is to own a home within the next 3-5 years, get a stable job, try having children, and thrive. Honestly, having children is important to me, but I have a plethora of other options when it comes to having kids. I overcome these worries by reminding myself of the overwhelming support I have from my family and close friends.

Macy with her brother and sister

Have you had to make any special adjustments due to the coronavirus?

I just try to be respectful of other people and self isolate. If I go out, I will wear a mask and wash my hands. The routine is normal to me as someone who has lived with a compromised immune system for a long time.

What advice do you have for those with scleroderma or other chronic illnesses?

My advice is to know your limits. It is okay that you cannot work like your healthy coworkers. It is okay that your house is not spotless constantly. It is okay if you cannot go to parties every weekend with your friends.

You are not a burden, and your life matters just as much as healthy people’s.

July 24 2023

Wyatt Wright

sclerounited_ppavrw Issue 2 Fitness, Juvenile Scleroderma, Kansas, Male, Sports

Kansas (United States)

WYATT WRIGHT

Scleroderma Stories Issue 2

Wyatt with Bob Saget at the Scleroderma Research Foundation’s Cool Comedy Hot Cuisine event

The Scleroderma and Fibrotic Diseases Foundation interviewed Wyatt together with his mother, Candace. Candace runs the Facebook page @wyattwrightthewarrior to share updates about Wyatt’s disease and life as well as news from the Wyatt The Warrior Foundation.

Please tell us a little about yourself

WYATT: I’m thirteen years old. We live in Kansas, and we love our family. My family and friends help me out through the day. They kind of distract me and keep my mind off of everything that’s going on.

CANDACE: We live out in the country, so he spends a lot of his time outside with friends and family. We spend a lot of time in our community giving back. Helping others is what we do a lot of. Wyatt is very involved with all of that. This Friday, we’ll be taking a little over 500 gifts and toys to our local hospital to donate, so he’s really involved in that way.

Wyatt and his family volunteer and raise money for veterans’ Honor Flights

What led to your scleroderma diagnosis?

WYATT: I was diagnosed when I was eight years old. I got hit with a pitch on my ankle. My mom went to go look at it, and she found a spot on my leg. I tried taking it off and washing it off, but it didn’t go away. We took it to the doctor, and they said I had a bunch of different things, so we went and got a different opinion. Then, they sent us to Kansas City, which is where the doctors found out that I had scleroderma.

I really didn’t understand anything about scleroderma when I was diagnosed. I had no idea what it was.

CANDACE: It was one of those things where I had to get the education that I needed before I could educate him. Once he got the education, it was a lot to take in. He took a long time to make sense of everything. For a while, we had a lot of bad days.

We sat down and realized that we can either live in this world depressed and upset, or we can pick up the pieces and make a change in the world. Ultimately, we chose to turn our negatives to positives. We realized many people have it worse than we do. The only way to find something positive in the disease itself was to help other people, and that is what we did.

It was an upsetting time for our whole family. We didn’t know what our lives were going to be like, and we had to figure out how to deal with it. We still have bad days here and there today, but now when we feel down, we get up and find something or someway to help others. It makes us feel better too. We’ve been known to even stop by the McDonald’s drive-thru and pay for the car behind us, and that really helps our bad days turn into good ones

How have your symptoms changed since your diagnosis?

CANDACE: Wyatt’s got seven total diagnoses. It started off with his linear scleroderma in his knees and his leg, where it goes clear up his ankle and all the way up his right side. His skin was really hard there, so he ended up having two surgeries on his knee at that time. He fell down a hill and ended up with Tourette’s and migraines. He has a positive RNP*, which hasn’t been totally activated yet. Wyatt then got gastroparesis, which took about two years to get diagnosed.
*Positive RNP: consistent with connective tissue diseases.

He just got one diagnosis after another. His life has changed a lot. He sleeps a lot more now and wears out quickly. It has been life altering, but we’ve learned to live with it.

WYATT: I think the hardest symptom for me to deal with would be the tightening of my skin, because I can’t do a whole lot of sports and running with my skin like that.

Wyatt’s family ziplining in Punta Cana

Could you please talk about your knee surgery experience?

WYATT: It was hard because I couldn’t walk and could only stay sitting and watch.

CANDACE: They had to invasively go in and deal with the artery behind his knee. For over four weeks after his surgery, he couldn’t play sports. He had trouble at school as well. The next time he had to have it done, they put him in a straight leg brace for over 6 weeks. He couldn’t do anything at all. It sidelined him for a while and took him out of all the things he could and wanted to do. He couldn’t hang out with his friends like he wanted to. It caused him a lot of pain.

WYATT: I mainly just spent time with my friends and family.

CANDACE: His friends came over a lot to play games and cards. I’ll tell you a really funny story! Wyatt was in his wheelchair because he wasn’t able to walk around. The neighbor’s kid had tied Wyatt’s wheelchair up to his bicycle, and there goes Wyatt down the street in his wheelchair!

He found ways to still interact – not the safest, but he found ways!

Wyatt fishing with his nephew

What other medications or treatments have you done?

WYATT: I’ve had my pacemaker surgery, CellCept, and methotrexate to try and help.

CANDACE: He actually takes 15 pills each day, which includes his CellCept and methotrexate for his scleroderma. For his migraines, he takes amitriptyline, and for his tics, he takes guanfacine. Even with his gastric pacemaker, Wyatt still gets really nauseous at times, so he doesn’t eat a lot and doesn’t gain a lot of weight. He takes a lot of nausea medication. Wyatt’s on scopolamine, the patch for anti-nausea. He wears one of those everyday to control his nausea. If he doesn’t have one of those on, then it’s a nightmare. He uses a lot of zofran and phenergan and reglan as well to do that. His lung function is not completely where we would like it to be, so he does steroid inhalers as well. He does Flovent for that. He has a whole string of meds.

WYATT: My chemo shot, the methotrexate, is my least favorite medication. I usually don’t feel well for the next day or two, and I’m not able to do much. I just kind of have to lay around in bed and try to get my stuff back together.

CANDACE: He has some major anxiety when it comes to getting ready to take his injection. He’s usually throwing up right before or after the shot, because his anxiety will get to him. For some reason, the next day is usually complete hell for him. This last one, he actually threw up for 2 days straight after the shot. It just kept coming at him. He hates that thing.

We actually changed from where you draw it up in your own syringe, and we started doing the pen style, where it looks like an EpiPen. When we switched to those, it did help his anxiety some, but it didn’t get rid of it all.

Which medications have been particularly helpful?

CANDACE: He likes the zofran and phenergan for his nausea. I will say that the methotrexate did make a change in his skin tightness. We saw him regain some of the elasticity in his skin.

He used to not get out of bed because he hurt so bad he couldn’t get up, walk, or do anything. His hands hurt, so he couldn’t write. When they put him on CellCept, he was actually able to get up. Now, he can write and move. It changed his life in that way. At one point, we didn’t know what to do with him, because he just laid in bed. When he started CellCept, he got up, started playing, going outside, and being a kid again.

Do you have a lot of scleroderma-related medical expenses?

CANDACE: Yes. We have good insurance, and that’s the nice thing that helps us out with it. At the beginning of the year, it costs about $2500-3000 to buy our meds for the first couple months before our insurance kicks in. We also have a lot of expenses from traveling. For his pacemaker, we have to go to Columbus, Ohio. That’s a 15 hour drive, so it’s expensive to travel that way.

He just got out of the hospital, but it wasn’t so much scleroderma related. They didn’t know that he got Rocky Mountain Spotted Fever. He spent three days in our hospital here, then they life-flighted him to Kansas City, where he spent another 2-3 days. At the time, our rheumatologist was trying to figure out what was going on with him. I haven’t seen those bills, but I was told just the flight itself is about $15,000. By the end of the year, we’ve usually spent about $25,000. The most we’ve ever spent in a year is about $30,000 out of our own pocket.

Wyatt and his family at the production of Fuller House with Bob Saget

What is the scariest part of living with scleroderma?

WYATT: The scariest part of living with scleroderma is not knowing my future.

CANDACE: For our family, and even when I talk to other families, it’s not knowing what the future holds for them. Without a cure or any type of knowledge, we’re just sitting here with all this money going to research with nothing coming out of it right now.And that makes it really difficult. There have been times when Wyatt has been really sick. There was even a time when he straight out asked us, “am I going to die?”

Now that he’s becoming a teenager, he doesn’t always talk about those things as much as he used to. I think he uses his friends more for that now, but he doesn’t know the certainty of what his life’s going to bring. Is he going to have a normal life and be able to get married, have children, and live on his own? Or will he eventually become disabled and have to have somebody? Those are “talks” that we’ve all had around our house.

Has scleroderma affected your school life?

WYATT: I missed a lot of school because of my appointments with doctors and trying to figure everything out. In the middle of fifth grade, I moved to online schooling, so that I could work according to my time and health.

Online schooling is kind of nice, because you can get everything done and then do whatever you want to throughout the day. Or, if you’re not feeling well, you can wait until tomorrow to do your assignments.

Do your friends understand what you’re going through?

WYATT: Some of them do, and then sometimes you have to tell them and then they finally understand.

CANDACE: He has some pretty good friends that are good about trying to understand. He’s also really good about educating them, so they know what’s going on with him. Along the way, he’s had some that haven’t been so great, but for the most part, he has really good friends, especially his baseball team, they’re really supportive of him.

Wyatt’s baseball team supporting Wyatt, who was in the hospital, by writing his number on their arms

How else has scleroderma affected your life?

WYATT: Well, I’ve been through a deal where I haven’t been able to go places or do things because I hadn’t been feeling very well.

CANDACE: He loves to hunt, and he’s missed out on duck hunting twice now. Once because we were tied up at the Mayo Clinic doing testing and another time because he was tied up getting his gastric pacemaker. He’s missed out on baseball season at times when his knees take him out for those weeks, and he hasn’t been able to play his baseball season out.

I will say he deals with it pretty good. When he doesn’t get to do something or is unable to go, he does a pretty good job of dealing with it – probably better than most kids would.

What are your hobbies and interests?

WYATT: I like to play baseball, hang out with friends, and go hunting and fishing as well. I like sports because I get to play them with my friends. Sometimes, I can’t do those things when I’m not feeling too well. I play baseball year round, but nothing’s really changed, I still try and keep up with everyone.

CANDACE: He had to quit playing basketball, wrestling, and football because of scleroderma. Now, the only sport that he actually plays is baseball. We made some adjustments along the way for baseball, but it doesn’t have the same physical impact as wrestling and football. With his gastric pacemaker, he can’t take hits to the stomach, which is why he can’t play the other sports. Baseball has become his love because he can run and hit without disturbing the pacemaker.

Do you have any goals or dreams for the future?

WYATT: My goal is to stay mobile and not tighten up or lock up.

CANDACE: He’s got those hopes and dreams of living a normal life, you know, go to college, have a normal life, succeed in those things along the way. I think he has a lot of the normal dreams that a lot of our children want anyways. One thing that he’s done really well is he’s always advocating for scleroderma. I think he’ll continue trying to find that cure and advocating for that cure throughout his lifetime as well.

WYATT: One particularly memorable event that I spoke at was the Cool Comedy, Hot Cuisine event.

CANDACE: At the event, he spoke with Bob Saget. There were a lot of comedians, and Wyatt got to hang out and be friends with them. They also surprised him with a message! Wyatt has also spoken at local events, but he was very excited to travel to Los Angeles and speak with the celebrities.

Wyatt and his family at the 2019 Cool Comedy, Hot cuisine event

How have you connected with other scleroderma patients?

CANDACE: We follow a lot of Facebook pages, and I talk with a lot of families. I try to stay big in the group. When Wyatt was diagnosed, we started going to the conferences. That’s how we met our friends – the ones who are here from Michigan right now. We met them almost six years ago at our first conference. We’ve now become “family-like” together.

Right after that, we started our Facebook page to communicate with other people. We wanted to meet as many people as we could out there and be as involved as we could. After starting our Facebook page, I ended up making a foundation, a 501(c)(3), to raise money. We send people to conferences every year. We usually scholarship anywhere from one to three families a year. We help with medical expenses too. We’re fortunate that my husband has a good enough job and insurance that we can handle our own expenses, but we help other families with medications, food, or things like that. One of our friends is in Rochester, New York, at the Mayo Clinic right now. We gave them travel money to help them through that because they were driving out there.

We do a lot of that through our page, trying to help others. It’s kind of why that page got started. It also communicated us with so many of the others, between the Scleroderma Foundation, to the Research foundation, to so many others.

There’s even a Parent page that started now, two actually, where you have to be a parent of a scleroderma patient to get on those pages. We’re involved with both of those pages, we follow them and try to watch them to see if there’s someone we can reach out to either meet them, be a part of them, or help them out

A photo from when the Wyatt the Warrior Foundation received a grant to help other families

How have you connected with other scleroderma patients?

CANDACE: That would have been the year he was diagnosed, I think six years ago in Nashville. It had been a month since Wyatt was diagnosed. I was researching online, and there was a conference going on. So, Wyatt and I loaded up to go.

After the conference, we went back to our room and Wyatt was like, “these people are just like me!” It was nice to meet people that were just like us and understood us. The moms understood where I was coming from, and the kids understood where Wyatt was coming from. It was like we were living the same life.

WYATT: It was so shocking, and seeing all of those people made me know that it was not going to be easy.

CANDACE: I think it was shocking to him because he didn’t know what to expect. He seemed to meet people that were crippled, so he had no idea what was in store for us. He was very emotionally shaken.

Wyatt, do you have any advice for any people or kids with scleroderma?

WYATT: Keep fighting and don’t let it take over.

CANDACE: He has a saying that he used when we were in LA which is, “I encourage all of you to never give in, never give up, and to keep fighting till the end. We will find a cure.” We got T-shirts made with this saying.

Candace, do you have any advice for other parents?

CANDACE: Keep fighting, keep going, and don’t let it take you down. Never get out of the fight. Never take no as an answer. There is always an answer, and you can never get enough opinions. We’re the only ones that can fight for our children, and we are the only people they have. If we don’t fight for them, nobody will. I encourage all parents to fight for their kids, go to conferences to learn more, and find people around them that can be their support systems.

Also give time to yourself, and do things that you need as well.

July 24 2023

Cat Davis

sclerounited_ppavrw Issue 2 Fitness, Juvenile Scleroderma, Pets, United States, Washington

Spokane, Washington (United States)

CAT DAVIS

Scleroderma Stories Issue 2

Photo: Susanna Brogan (www.susannabrogan.com)

Please introduce yourself

My name is Cat Davis. I am from Spokane Washington. I was diagnosed with Scleroderma at the age of 22, and I am 32 years old. So, I have had Scleroderma for ten years now. I love my family and friends so much. They are what keeps me going.

I have had cats, two of them, for about 7 years now. They are amazing and such great company. I also have a Toy Cockapoo named Gigi. She is such a lover and really has helped me with my mental health and has allowed me to realize that animal therapy is a real and true thing.

Last fall, my health declined, and I was in a bad place mentally. I had always wanted a dog, but kept pushing it back, but I bit the bullet and decided that living with scleroderma doesn’t allow me the luxury of time, so I just went out and got her. It has been the best decision that I have ever made.

I love my fur critters to death! They have saved my life, and they allow me to get out of bed every day and care for them, which in turn cares for me. I am also really involved with my church, and I love listening to podcasts and watching documentaries.

What are you passionate about?

I would say that my number one passion in life is helping others. It’s really important for my mental health and for my own journey to give back and help other patients like me, whether they are terminal, living with cancer, or just depressed. I find a great sense of purpose in helping people.

God has definitely blessed me with a gift in my ability to be very open about my struggles physically and mentally dealing with scleroderma. I find that, in sharing my story, it helps other individuals going through a tough time, and that I find very fulfilling. Helping others in turn helps me emotionally.

The biggest way that I reach others is through my Cure for Cat website. I started the Cure for Cat website after my very first stem cell transplant in 2013, and that allowed me to share my journey. In turn, people find me through the website and ask me questions about doctors or advice. Honestly, social media has been a huge facilitator of my passion for helping others.

Cat in 2013, when she underwent an autologous stem cell transplant

Have you had to make adjustments to your hobbies and interests to accommodate for scleroderma?

Before Scleroderma, all of my hobbies and interests included activities that were all about athletics. I loved playing volleyball, and I went skiing in the winters and wakeboarding in the summers. I was extremely athletic, and so are most of my group of close friends.

Now, my hobbies have completely changed, all due to the fact that physically I cannot do most things that I used to do. My body has changed so much from scleroderma, and I am not physically capable of being as athletic as I was before my diagnosis.

I definitely went through a rough, almost mourning, process when I could no longer do certain things, but I am a very black and white type person. It is what it is, and this is how it is going to be, so I had to figure out how I can move forward and be grateful for this life and the things I can still do. I try not to take my life for granted. It’s very important to me to spend time with my loved ones in any way I can, even if it isn’t sports.

I definitely went through a few years of feeling like I am lacking and being upset that I can’t do what I used to but, over the years, I have come to realize that each year my limitations change, and I need to find new things that bring me joy. I enjoy finding new things to fill my cup!

Cat in 2008, before developing scleroderma

When were you diagnosed?

I was 22 years old when I was officially diagnosed. At the time, I was living in Arizona. My disease presented itself with finger ulcers and extreme tightness in my face and chest area. I noticed it pretty much right away and would ask my friends if they noticed changes. All of my friends would say “NO!” but I knew something was off.

Initially, I started with the finger ulcers and tightness in my skin on my chest around October. Luckily, I was diagnosed around eight months later in May by a rheumatologist. When I started to get the finger ulcers, I immediately researched on the internet about them, and scleroderma came up as a cause for finger ulcers. I remember thinking “God, I do not want to have this disease,” and I prayed for the people who did have it.

So, when I was told I had it, I was really quite shocked, but I knew all about it and exactly what it was. Of course, I was told the common phrase: “you have two to five years to live, but don’t worry, you won’t have any wrinkles.”

That year was different because, besides the flu, I had never really experienced any kind of illness before. The moment I was diagnosed, I hit the ground running. I took my diagnosis very seriously. I never really had a time of denial or anger. I just said to myself “okay, let’s do this,” and I started to research scleroderma and figure out the best course of action for myself.

I had seen pictures of scleroderma patients and read a lot, and I decided I did not want to live my life slowly declining. I desperately needed and wanted to be around for my family and friends, so I was very aggressive from day one. For the last ten years, I have fought very hard to treat my illness. I went out of the country and tried a ton of different things to treat my scleroderma.

Cat undergoing regenerative cellular therapy in Mexico in 2011

Would you say, looking back now, that your disease was hard to treat or that it progressed quickly?

My disease has been very aggressive from day and has progressed pretty quickly. That is why I eventually needed two separate stem cell transplants: one in 2013 and another one in 2017. I describe it like a volcano that could erupt at any time, and that has happened quite a lot.

Scleroderma tends to have a mind of its own. In general, autoimmune disease does not discriminate. They do not care who you are, your age, your sex, race or religion. They will get you no matter who you are.

Cat’s health declined from 2015 to 2017

16-18 months after her autologous stem cell transplant in 2013, Cat relapsed

Cat received her second stem cell transplant on September 6, 2017. Her brother donated his non-diseased stem cells to her

When did you first meet another scleroderma patient?

I met my very first friend that also had scleroderma shortly after my diagnosis. I asked him “if he could do one thing differently after being diagnosed, what would it be?” He flat out told me that he would have quit working immediately. So, that is what I did. I quit my job and fully concentrated on my health.

Cat with Corey, her first friend who also had scleroderma, in 2010

Which symptom is the hardest for you to deal with?

The hardest symptom for me changes all the time. At first, it was my finger ulcers. After I had my first stem cell transplantation in 2013, I never had another issue with finger ulcers. From that point on, it was and still is my gastro system. At this point, my G.I. system is 100% paralyzed and completely useless. I throw up pretty much every single day and am not a candidate for any corrective surgeries.

This year, I was officially diagnosed as a terminal patient and have stopped treatment for my G.I. issues because I do not wish to live out the rest of my life in pain, hospital bound, or miserable. My doctors, my family, and I spoke at length about what I could expect as far as my quality of life goes and the options I had treatment-wise. We decided as a family that I was going to decline treatment for my stomach and GI issues. I still take almost 30 pills a day for my scleroderma, but my G.I. system is too far gone.

God put me here for a reason, and I wanted to enjoy all of my moments for as long as I could. It was a very difficult decision, but after I made it, I felt a weight lifted and finally felt free of that burden.

What is the scariest or hardest part of living with scleroderma?

For me, now that I am terminal, it’s more of just living in the unknown. I feel very led to see people that I love and be proactive in facilitating that and making those memories while I have time left.

I want to leave a legacy. I want my family to be proud of what I have done with this disease and the hard parts I have been dealt. That is why I share. I share my story, my faith, my difficult moments – I share it all. At the end of the day, this journey isn’t about me. It’s God’s plan.

Cat with her mom, Sally, and Bob Saget (whose sister, Gay, passed away from scleroderma)

How has scleroderma affected your family, social, and dating life?

I have had to make adjustments on so many things in my life since living with scleroderma.

My sickness has torn my family apart. There is a part of my family that no longer speaks to me because of my scleroderma, and that is devastating. I have lost a ton of friends from this disease, but I have also had to let go of friendships that were not serving me well emotionally. It’s a hard thing to go through, but in the end, that stress and burden goes away.

My life and time are limited. I can’t have family and friendships that do a disservice to my overall mental and physical health in my life. It may sound harsh, but when you’re living with an illness like scleroderma, sometimes you need to be selfish for your health. Ultimately, that is what needed to happen.

Sometimes, when you’re sick, people who are not really do not understand how to cope, and that can turn toxic. Sickness does not just ruin the person who has it. It ruins everyone and everything around them and plays a huge role on the future of your friendships and family.

I am single to this day, and I feel it’s 100% because of how authentic and raw I am about living with this disease on social media. But that’s ok. If you can’t handle me at my most truthful, what’s the point?

How has scleroderma changed your life?

I have had to make adjustments on so many things in my life since living with scleroderma. Ultimately, your life is not your own anymore and can get very difficult if you let it.

I am a pretty open person, and I am very good at communicating. I will say if I am feeling left out or like my thoughts or opinions don’t matter. There are so many things I cannot do, but I always make sure to make the memories I can have on my own terms. It’s not other people’s fault that I am sick or that they are not. It is all about your attitude.

I am not who I was before I had scleroderma, but also it is extraordinary.

Because I have been dealt these cards, I see the beauty of the world differently. I cherish each moment and enjoy people, places, and feelings so much more than I think I would have if I didn’t get sick. I hate the illness, but it has been such a blessing in so many ways. I have met some very amazing friends who too have scleroderma, and they have changed my life for the better.

I would never say I wish I didn’t get scleroderma. It has really blessed me and my family in so many good ways that they sometimes outweigh the bad. I would not trade my life for anything, even my health.

How would you describe scleroderma in two words?

Unexpectedly beautiful.

What advice do you have for people with scleroderma and other fibrotic diseases?

My biggest advice would be to never ever take the advice of just one doctor. Always be your own advocate and fight for yourself. If you don’t, you will die and you will go downhill extremely fast.

You are the only one that can make those life changing decisions for yourself, so make those phone calls and do what you need to do.

July 24 2023

Keanna Orlang

sclerounited_ppavrw Issue 2 Fitness, Juvenile Scleroderma, New York, Parent, Pets, United States

Harlem, New York (United States)

KEANNA ORLANG

Scleroderma Stories Issue 2

Please introduce yourself

I am from Harlem, New York, but I currently live in Long Island, New York. I like to listen to music, sing (although I don’t sound so good) but I would say it helps me to feel good. I love working out, & just hanging out with my loved ones. I have a French bulldog named Mazi.

The most important factors of my life are God, my child Kaelon, and my husband/child’s father, Sayquan. God has helped me get through so much in life & I know for sure he’s always with me. My child, my miracle, my king, Kaelon, has taught me to continue the fight. Though I have painful days, I never let him see me down, so he can grow up to know NOTHING CAN KNOCK him from what he wants in life. Sayquan has been by my side since high school, always reminded me we are in this fight as ONE, and never left me alone or made me feel alone. My family is EVERYTHING to me!

I can’t forget my scleroderma sisters/brothers that I have been connecting with on social media. I am thankful and grateful for them all.

Keanna, her husband (Sayquan), and their son (Kaelon)

Could you please describe what led to your diagnosis?

My mom noticed changes, such as my fingers curling and my legs getting stiff. You can actually see that my hands curled when you look at old photos of me. I could barely open my hands when I was younger. I was always turning purple in my fingers and toes, and I was always in pain. Sores developed on my fingertips and toes as well.

When my mom noticed the changes, she took me to see what was causing the changes. They sent me to a place and took a piece of skin from my arm to test it. That’s when they told my mom it was scleroderma. I still have a light scar of the spot they took skin to test.

Keanna as a baby

Keanna at around 4 or 5 years old

What was the experience of growing up as a young child with scleroderma like?

I used to be alone in parks while kids were playing and used to cry at times because I couldn’t play like the other kids could. I used to wear rubber fingertips. Other kids laughed at me for that. I also had some family members, adults (sad to say), speak down on my disability and wish bad on my health.

I never had a support system growing up from my family like how I see MOST scleroderma people have family members doing walks with shirts. I never had that. It will be like a finger count of people that’ll show love and try to show support.

I always felt like an outsider. I honestly really made myself who I am today by telling myself at all times that scleroderma is just a word. I would force myself to play even through pain. I would fall, get cut up, and cry hard – not because of the cut or bruise, but because I felt I had to fight my way to live life normally.

Keanna’s hands now

Did having scleroderma affect your ability to attend and participate at school?

I attended a regular school from kindergarten to fifth grade. Eventually, I was having problems in school from getting teased and bullied. I was also slow at writing and always in pain because of my fingers, so I wasn’t at the same speed as other students. In gym class, I couldn’t fold my legs or do certain things that my classmates were doing.

After seeing me go through all this, my social worker told my mom about a school called “Blythedale” for special needs, and told her that I had to be transferred there. I was at Blythedale until 8th grade, and then I went to another high school for special needs called “Henry Viscardi” and finished high school there.

I felt more welcomed at Blythedale and Henry Viscardi, because there were people with all kinds of disabilities. It taught me to be grateful for what I can do. At Henry Viscardi, I met a girl that had scleroderma as well. We spoke somewhat, but not as much as we should’ve. But, I thank god that I met her because I knew I wasn’t alone in school.

What effect do you think scleroderma has had on your goals and mindset?

Before, I was really low on myself and felt as if I was never going to be great or never going to conquer my goals… But now, with time, that mentality has changed.

I fight every day and push myself now as a mom to do everything in my power to move forward and DO everything that other people think people with scleroderma CANNOT do. I just tell myself every day, “Just because you have scleroderma doesn’t mean you can’t do what people without it do.” If you put your mind to it, you will get through it and make it happen, even if it takes a slower or different way to make it happen.

I know I CAN and will make it happen!

Keanna doing the “Vogue Challenge”

When you were pregnant with your son, were there any difficulties because of your scleroderma? Are there any difficulties now?

Not anything too serious. I just gained weight, which I had never gained before. I felt so happy with myself. Now, I lost all that weight, and I’m back to how I was before with no difference in weight, thank god.

I delivered him through c-section, but I healed up great as well and took good care of myself through it. The only difference now is that I started losing my hair. So, before I lost a lot, I cut it off myself.

Keanna while pregnant with her son, Kaelon

Have scleroderma’s effects on your physical appearance influenced your confidence or view of yourself?

Yes, it has. I always wanted to see how I would’ve looked before scleroderma. But it attacked me so young that I never had the chance to see how beautiful I would’ve been. I think of this everyday: “how I would’ve looked before this happened.”

I met a lot of sclero girls that saw their looks before sclero, but I never had that chance. I don’t feel so pretty but, HEY, I am like this, so there’s nothing I can change.

As someone with scleroderma, have you had to make any special adjustments due to the coronavirus?

I just stayed in for 3 months. When I needed to go out for important things like grocery shopping, I made sure to wear gloves and masks. I just kept away from others, and I’m still keeping away as much as I can.

What do you think is the hardest part about living with scleroderma?

Being looked at weird, and just people not knowing how to show support and not knowing what pain we feel on a daily basis. Not having family support and feeling tired all day every day is also really tough. To be honest, my son, my husband, and God motivate me on the more difficult days and make me feel like nothing is wrong.

Keanna with her husband and son, who motivate her during difficult times

Do you have any advice for those living with scleroderma or other chronic illnesses?

Just be who you are and don’t let scleroderma have you. You have scleroderma, and you’ll beat its behind.

July 24 2023

Angela Fernandez

sclerounited_ppavrw Issue 2 Art, California, Child, Juvenile Scleroderma, United States

Los Angeles, California (United States)

ANGELA FERNANDEZ

Scleroderma Stories Issue 2

Please introduce yourself

My name is Angela Fernandez. I am 11 years old, and I am from Los Angeles, California. I like to paint or color because it helps me get rid of stress. My dream is to have a big house, make an art gallery, and have a big kitchen in my house to bake. My goal is to have a good job that can help me pay for my treatments and my medicines.

Angela Fernandez Painting Collection 480x720

When were you diagnosed with systemic scleroderma? What led to this diagnosis?

I was diagnosed with systemic scleroderma in September of 2016, although I believe I have had scleroderma since I was 5 years old. I believe this because of physical changes I have noticed and seen throughout my photographs.

Everything began in the spring, when I noticed a small but deep hole on my elbow that was at some point just a scratch or small lesion. The lesion was not healing whatsoever, but I did not feel any symptom of infection. But, obviously, it became worrisome. Furthermore, I began losing my appetite, and I did not even want to drink water anymore. As a result, I began feeling constant and chronic fatigue. I would sleep a lot and would wake up late into the day. Whenever I went in the car, I would instantly fall asleep.

My doctor gave me a month to gain weight, but I never did, and I still had no appetite. My mother then took me to the pediatrician to get my elbow checked out, and it was there that the doctor noticed how skinny and underweight I was. My pediatrician asked me if I was worried about being more full, and I answered that I didn’t want to be fat, and thus my doctor thought that I had infant anorexia.

After the month, I visited my pediatrician once again, and it was then when she noticed something off with my nails and arms. She also noticed that my hands couldn’t touch my elbows. As a result, she decided to do blood work, and we received two possible diagnoses. One was Lupus and the other arthritis, so she referred me to a rheumatologist at the Los Angeles Children Hospital.

After many tests, questions, and evaluations I was diagnosed with systemic scleroderma. I was put into further tests, and I was then also diagnosed with esophageal dysmotility and Interstitial Lung Disease.

Angela with her family

How has this affected you?

This has affected me in many ways, including movement in my fingers, difficulty with opening my mouth, fatigue, difficulty concentrating, and insomnia. I have been receiving infusions since 2016, which have been really difficult, especially due to the hardness of my skin. Doctors have a really hard time placing needles correctly, and over the years my veins have become thinner and thinner, and the pain is greater every time.

I have also left school due to bullying. Emotionally, it has been very difficult to accept my diagnosis because it meant I can’t play like I used to and like the rest of the kids my age. It has been three and a half years, and I’m still learning how to live with this phase of my life.

Although it hasn’t been very easy, every day I try my best and do what I can. I have met many wonderful and amazing people who support me to surpass this disease.

I am currently receiving physical therapy to regain the mobility of my hands and arms. I have 2 calcinosis in both elbows, one with another ulcer in my fingers that make my days painful. I struggle daily with my fatigue and my low school concentration. I cannot open my own bottle of water. Everyone thinks that I look good, but in reality it is very different.

An ulcer on Angela’s elbow

What is the scariest or worst part of having scleroderma?

Having to go to the hospital and the studies on me, especially blood tests and esophagus studies, I think that’s the scariest. For a while, I was not gaining any weight, and my gastroenterologist suggested a feeding tube and explained how it would be, and it was difficult for me. I started taking smoothies with protein and gained a few pounds.

Have you met other people your age with scleroderma?

I have met girls from Mexico through the internet. I also attended the childhood scleroderma convention.

What advice would you give other children with scleroderma?

That we are not alone. That we have many people around us who love us, and that scleroderma attacks us all differently.

Science is advancing every day to help us find a cure.

That we are something unique in this life, and it makes us be better people and value what we have, even suffering many things.

God is always with us, and his timing is perfect. Even if we don’t see him, he is always with us.

July 24 2023

Shannon Hastings

sclerounited_ppavrw Issue 2 Juvenile Scleroderma, Parent, Texas, United States

Fredericksburg, Texas (United States)

SHANNON HASTINGS

Scleroderma Stories Issue 2

Shannon’s mom (Julie), Shannon, and Shannon’s sister (Sarah)

Shannon is the founder of Camp Diasozo

Shannon founded Camp Diasozo, a unique camp working to enrich the lives of children with morphea and scleroderma and their families by offering a retreat-like environment for them to enjoy.

Camp Diasozo is located in the county of Fredericksburg, Texas. The camp gives the children a place where they can make new friends that they can learn from and share with, a place for their families and others who struggle with the same health and social issues, and most of all – a place where they belong.

Visit campdiasozo.org to learn more

Could you please tell us about yourself?

I’m 22, I live in Fredericksburg TX, I’m married, and have an 11 month old baby boy.

I don’t really have a lot of hobbies or anything like that, but I love my therapy animals, homeschooling my nephews, reaching out with Camp Diasozo, and Jesus. Family is very important to me.

What led to your scleroderma diagnosis?

My pediatrician sent me to a dermatologist when I was 4 to get a birthmark looked at (it was completely unrelated and went away soon after). The dermatologist saw a patch of morphea, and it took 4 more years of biopsies, blood tests, scans, and doctors to finally get the ‘localized scleroderma’ diagnosis. My physical symptoms included arthritis, asthma, Raynaud’s, vascular issues, and the ever present sight of morphea.

Even though I was so young, it’s safe to say that I thought I was going to die from this horrible disease basically my whole life. It’s such a rare disease, and it took so long for me to meet anyone else with it that it seemed like such a scary lonely monster.

At this point in my life and several diagnoses later, I know that, as awful as a disease this is, it is part of who I am and has shaped me. I wouldn’t have it any other way.

Shannon and her family

When did you first meet someone else with scleroderma?

I was 15, and they were a camp counselor at a camp. I was at a neighboring camp, and someone introduced us, but we only briefly met. After that, I went to the scleroderma conference, and that was absolutely amazing. I had never felt so at home with so many people before that I spent most of the weekend crying.

When and how did you come up with the idea for Camp Diasozo?

When I was 12, I had to temporarily move to Dallas with my mom for six weeks to do some UVA1 phototherapy. Driving back from the appointment to the hotel one day, it just came to me like a vision so completely out of the blue. I just felt so ostracized from everyone I knew, and I don’t want anyone else to feel that alone or different either.

My dad has such a heart for it and hopes he can quit his career to run Camp Diasozo one day.

Shannon’s parents, Julie and Jerry

Do you have any advice for other children/young adults with scleroderma?

That no matter what, you’re not alone and you are more than your disease. Embrace having scleroderma and be stronger because of it. Don’t let this make you weak.

July 24 2023

Jayda Anastasia

sclerounited_ppavrw Issue 2 Adventure, Fitness, Juvenile Scleroderma, New York, Raynauds, Small Business, United States

Long Island, New York (United States)

JAYDA ANASTASIA

Scleroderma Stories Issue 2

Please introduce yourself

My name is Jayda, and I’m a 19-year-old girl from Long Island, NY! My dog, Mocha, means the absolute world to me, as well as my mom, Jennifer, my sister, Selin, and my boyfriend, Jacob.

I used to row back in high school, but when my symptoms got in the way, I put my energy into the gym! I really like fitness and nutrition as a whole. Health and wellness is number one for me, which is why I want to become a nurse practitioner in psychiatry when I graduate. I kayak, fish, paddle board… anything in the gym or on the water is for me! I also have an Etsy shop where I make soaps, candles, sprays, etc!

Jayda, her boyfriend (Jacob), her sister (Selin), and her mom (Jennifer) pictured before prom

How have you had to make adjustments to how you do these things to accommodate for your scleroderma?

Sometimes, my joints hurt so bad that I have to change my workout plan, or even just take a rest day. I’ve had to reschedule hikes and let my friends go kayaking without me, but I never let it completely stop me. For example, if I couldn’t kayak, I’d still spend time outside just to get out. 50% is better than 0%, even if it’s not perfect.

When were you diagnosed, and what symptoms led to your diagnosis?

I showed symptoms when I was 3 ½, and I was diagnosed when I was just turning 5. I was sick a lot as a kid. I was in and out of the hospital a lot for body pain and breathing issues. I cried a lot about joint pain, and patches started growing on my skin.

My mom, being pregnant with my sister and tired of me being so sick with no answers from our local doctors, decided to include even more specialists located near NYC, who then ran blood work and discovered between the tests and my patches I had scleroderma.

Nobody here in Long Island thought about it because I was a little kid. I was so young, but I remember that I started to feel better after I was diagnosed. We had a plan on how to tackle this and how I could grow normally.

I was initially scared because I didn’t know what it meant, and they said there was no cure, but as I grew up, I learned more and got more comfortable with it.

Was there a certain point at which you started actively learning more about scleroderma?

It piqued my interest when I was around 10. I used to dance competitively, and eventually the pain became too much and I had to slow down, so I wanted to learn more on how to naturally help myself. Ever since then, I have steadily learned more and more! I try to teach others around me because many don’t even know what it is.

What is the hardest symptom for you to deal with?

Probably the pain. I try to manage the pain the best I can, though. I really don’t like the patches on my skin. They make me self conscious, especially the one on my back because it’s so huge!

People always ask me what it is when I’m out. It’s not physically hard, just mentally challenging – like a constant reminder.

Have you developed any other symptoms since your diagnosis?

Raynaud’s, GI issues, and migraines. The GI issues and migraines have settled down in the last year though! It’s really the joint paint that I feel the most. I take care of myself through diet and exercise to try and relieve these issues.

I’m blessed that most of my symptoms aren’t so bad! I’ve been diagnosed for over 14 years now, and I feel like I could’ve been so much worse.

What is the most difficult part of living with scleroderma?

I would have to say the “not knowing” is the worst because some days I am in serious pain, so how do I know it for sure will pass? Will I get worse as I grow older now that I’m almost an adult? Not knowing kills me! I’ve learned to wear a brace, stretch, etc. to help alleviate some of the pain, but I have no idea what to expect in the future or how to brace myself for that.

Has scleroderma affected your ability to attend school or work? Did you have any teachers or friends that understood your scleroderma?

Yes. My junior year in high school was the worst I had ever gotten that I could remember. I could barely move, I kept fainting, and I stopped eating like I was – which made me extremely anemic. I was so sick, I had to come in late, leave early, or just not show up so often. I got so lucky with my teachers because they all worked with me and knew that at the end of the day, I would get everything handed in that was necessary. Still finished the year with a 101 GPA! Just missed a lot of classes.

Work, not so much. Sometimes, I have to tell my boss I need to work a little slower, but I’ve never called out to a job in 5 years of working now.

When I was younger, my friends didn’t understand, but as we got older, they became so supportive! Especially my boyfriend and my best friend, Julianna. Even my new college friends helped me out through this pandemic and tried to protect me before we were forced off campus!

Could you elaborate on how they’ve helped you through this pandemic? Or talk about any adjustments you’ve had to make because of COVID?

Firstly, I should mention I attend St. John’s University in Queens, NY. It was one of the first epicenters in the nation at the time, and the school didn’t know what to do with us.

As soon as we returned from spring break, my friends got my food for me so I wouldn’t wait in long lines, they gave me the space I needed, they washed their hands more often to come near me. Even going to class, I was nervous. The ones in my class got my work for me so I could do things remotely, and I only went to take my exams for the week we remained there.

My family was in huge jeopardy, and we even lost my uncle (NYPD, couldn’t work from home) because of COVID. I had to make huge adjustments that were so hard for me. If you can’t tell by now, I love going out and being a go-getter. I couldn’t see my friends, I didn’t see my boyfriend, and I barely saw my family because of COVID. I did school remotely like everyone else. I was extremely stressed from all the changes and I felt them.

Now, I have no choice but to work again. I wear a mask all day. Luckily, I don’t have to touch the public much. I just constantly wash myself, and I shower immediately after every shift.

I went to one restaurant just so I could see my boyfriend after months! We used to hang out like 2-3 times a week minimum for the last four years! We even went to high school together so it was every day back then, then he graduated and went to school, so it changed to the 2-3 days. Then not seeing him or my friends for months? No gym to work on symptom management? Beaches closed?

These all hurt, but having to cover up and protect myself was the biggest change. Lots of physical, mental, and emotional changes.

Did you miss any particularly memorable moments or events because of your scleroderma?

Not really! I missed one trip to the city to see the tree and visit the cathedral, but I ended up going two days later, and it was nicer weather! I go every year anyway, but I always made it to where I needed to be!

Sometimes, I just had to take it slower. I went to MSG a lot for basketball games (huge Big East fan!), and sometimes had to plan to go earlier so I didn’t have to rush in case I didn’t feel good. I tend to plan around scleroderma so I can do what I want and I can aim for more the day of if I feel better. I learned it from a young age.

Jayda in Rome during Epiphany

Could you speak on the medications or treatments that you’ve done for your scleroderma?

None, really. I had a few NSAIDS (nonsteroidal anti-inflammatory drugs) and over the counter pain medicine back when I was younger, but I grew tired of medications all the time. I started looking into diet guidance and fitness when I was in middle school and just started eating healthier.

People don’t realize the impact food has on your body! Now, I definitely don’t mean give up sweets because I love my cake and cookies, but making sure you get your vegetables in and focusing on stuff that’ll make you feel better is the key.

Also, sitting idle for hours doesn’t help symptoms! So I learned to keep myself active and rest when I need to. If the pain becomes too much, I have some topical creams and over the counter stuff to take, but I try to just wear my brace on my knee (where I feel it most) and relax! I know it’s not a miracle cure, but it works for me.

What advice do you have for those with scleroderma or other chronic illnesses?

My advice for people with scleroderma and other chronic illnesses is to do your best to put yourself first! I know it seems hard, but if you don’t, you’ll lose control of your symptoms. Your mental and physical health come first always! Take the rest day, then come back better than ever.

Juvenile Scleroderma

Hannah Sportiello

Shirley Alvarez

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Jessie Clark

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Macy Phillips

Wyatt Wright

Cat Davis

Keanna Orlang

Angela Fernandez

Please introduce yourself

When were you diagnosed with systemic scleroderma? What led to this diagnosis?

How has this affected you?

What is the scariest or worst part of having scleroderma?

Have you met other people your age with scleroderma?

What advice would you give other children with scleroderma?

Shannon Hastings

Jayda Anastasia