United States

July 24 2023

Jessie Clark

sclerounited_ppavrw Issue 2 Dance, Juvenile Scleroderma, Pennsylvania, United States

New Enterprise, Pennsylvania (United States)

JESSIE CLARK

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

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

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.

July 24 2023

Amy Gietzen

sclerounited_ppavrw Issue 2 Advocate, Art, Coaching, Dance, New York, United States

Buffalo, New York (United States)

AMY GIETZEN

Scleroderma Stories Issue 2

Please introduce yourself

I’m a middle child with an older sister and a younger brother. I live in upstate New York with my parents. My family is everything to me.

My hobbies are painting and quilting. Of course, my #1 passion is being an advocate and speaking out about scleroderma and raising awareness in any way possible.

I have a best friend that I have known since grade school who is an amazing person in my life. I babysit her beautiful kiddos twice a week, and I love those babies to bits!

Amy babysitting Willow and Maverick, who keep her laughing and smiling even on the worst days

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

As a teen, I was working at a nursing home when I started to feel wrist and elbow pain. My fingers had always been big and puffy, but they were sore, and I noticed they turned blue when I was cold or stressed!

That went on for about a year before I finally, with my parents’ guidance, made an appointment with an orthopedic surgeon to get checked. He was the one who looked at me and said, “you have scleroderma!” Get your affairs in order and work as long as you can! It’s terminal!

That was the day my life completely changed on February 15, 2001.

Amy with Kelly, her “ride or die” and best friend since fourth grade

How did you react to this?

My first reaction was kind of blank. I had no idea how even to pronounce this disease, let alone know what it was.

Through a ton of research and after five years of seeing doctors who had no idea what to do with me, I ended up at a hospital five hours from my home in Pittsburgh. They had a specialist who had 40 plus years of experience, and I desperately wanted answers and some form of treatment. He and his team of researchers and medical professionals gave me just that.

I had found my first glimmer of hope in this movie reel of despair. I finally got answers, and even though some of the answers weren’t necessarily definitive, it was a start. I was still overwhelmed and angry that this disease took over my whole life, including my goals and future dreams. I went from shock to outright furious in the first five years.

I want to say my anger faded quickly, but it didn’t. It took me a long time to come to grips with my new reality and how I felt, looked, and how my body worked. I had to learn myself from the inside out all over again, and it was not easy.

One of Amy’s many treatments for scleroderma: a pic line was placed in her neck for three days

As a 19-year-old, what did scleroderma change about your lifestyle?

It changed EVERYTHING! My body wouldn’t let me do many things I was used to doing and things I enjoyed. I loved dancing, but I was stiff all the time after diagnosis, and it became difficult for me to move without being in pain. I coached softball and eventually had to quit because I couldn’t participate in practices.

Even small things like tying my shoelaces and buttoning my shirts became quite tricky. My hands and fingers started to contract and curl inwards. It got so bad that I had to undergo several surgeries to straighten my fingers out so I could better use them.

Before I got sick, I wore little to no face makeup. I had very clear, blemish-free skin. It seemed almost overnight that my skin, not just on my face but all over my body, started to have red blotches all over it. I was covered from head to toe! I learned later that the red blotches were called telangiectasias, and they were broken capillaries, a consequence of scleroderma. Still, it was a prominent embarrassing feature that I now had to live with. People would see me as a complete stranger and would ask if I had an allergy or if I had been in a fire.

It made me feel singled out and like I was so unattractive. It did a significant number on my self-esteem for sure.

Amy at the airport. When there are long walks, Amy gets around by wheelchair.

Is there anything that has helped you overcome this effect on your confidence?

It has taken me some time to be okay with all of the physical changes scleroderma has placed on me.

I think the biggest thing is being okay with who you are, and the one thing that has helped me the most in achieving that is my family. They accept and love me unconditionally and know that, despite any physical symptoms I may have, I’m still me, and I’m breathing each day, and they and I are grateful for that.

Trusting that I am enough makes me feel that my imperfections are beautiful.

Amy with her dad and caregiver, John, at a speaking engagement in Houston with NORD

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

Be your own advocate! You need to know exactly what is happening to your body and the best course of action. So, do as much educational work up as you can. You live with it daily, so you are yourself the best person to judge how you are feeling. It is definitely good to know the ins and outs of your disease.

Lastly, do not take no for an answer. Keep fighting to get the answers you want and you must feel comfortable with your team and treatment plan! If you are not sure about something, ASK.

It is your right as a patient to be given the answers or, as close as they can get to the answer. Fight for your life. It is the only one you have!

Amy (right) attending the Steffans Foundation’s Interprofessional Education Event, where she was a keynote speaker

July 24 2023

Kimberly Gonzalez

sclerounited_ppavrw Issue 2 Georgia, Juvenile Scleroderma, United States

Georgia (United States)

KIMBERLY GONZALEZ

Scleroderma Stories Issue 2

Please introduce yourself

I live in Georgia. I have one sister and two parents, and I have a little dog named Draco. My hobbies are walking to the park, working out, hanging out with friends, and going out to eat or watch movies.

When were you diagnosed with scleroderma, and how did you react?

At the age of 8, I went to a lake and came out purple. I went to the doctor, and they misdiagnosed me with arthritis. For four years, I was on the wrong medication. My mom noticed that the medication wasn’t doing anything, and I was getting a lot worse. She did some research, and that’s when, at the age of 12, I was correctly diagnosed with Raynaud’s with scleroderma.

I was very young, and I grew up with my sickness, so I technically didn’t really feel the change. But, I would get tired in school when I would have to do the mile run. It was very difficult, and the coaches didn’t understand why, and neither did I, but I would get exhausted very fast. In middle school, I started getting some open wounds on my elbows, so I had to tell my orchestra teacher that sometimes I couldn’t play because my fingertips or elbows were hurting a lot.

Did you have friends or teachers that understood your disease and what you were going through when you were younger?

Growing up, I had a lot of doctor appointments. In my high school years, I had to get all the teachers and counselors together to tell them that there would be a few weeks out of the days that I couldn’t come to school due to me having to go to my doctors appointments. So they were okay with me sometimes not attending school. They would give me an extra day to turn projects in, or we would figure out how to do school from the house.

I only shared my sickness with my immediate family up until my stroke, when I could longer hide it. I opened up to all my friends and a lot of my family. They had no idea what I was going through because they only saw me when I felt good. They never saw the hardships until I had my stroke. Everyone was okay with it, thankfully. They just needed to check up on me and learn how to be very patient with me.

Kimberly with her sister and parents

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

From 12 to 15, it was kind of learning throughout. As my condition worsened in my junior year of high school, when I lost my first fingertip, I had to do a lot more research because that’s when I realized that my condition can worsen throughout the years, and it certainly did.

Have you had to make any adjustments to accommodate for your scleroderma?

Definitely. Two years ago, I was diagnosed with APS*, which led to me having a stroke. So during the recovery, it was hard for me to work out. I was in a wheelchair for nine months, I had to practice how to walk again, and stuff like that.
*APS stands for antiphospholipid syndrome

As far as eating, I now have to use a special utensil to eat because of the harshness of using a spoon or a fork. They can create ulcers, which can cause my scleroderma to flare up. I also don’t drive anymore. I depend on my sister to drive me to my doctor appointments.

After I had my stroke two years ago, my family has fully 100% taken care of me. For example, I can no longer make my meals or shower by myself. I fully depend on them.

As for moments that I couldn’t do something because of my scleroderma, I could never go ziplining due to me losing breath or not having enough grip. But, two years ago, I convinced my parents after my stroke that like, “hey, I could die, and I want to do everything” so we went to Costa Rica, and I ziplined for the first time with help. It took me 20 minutes longer to get to the point to zipline, but I did it. It was one of them, it was on my bucket list and I did it!

Kimberly in Costa Rica after her stroke

What would you say is the scariest part of living with scleroderma?

The scariest part of living with scleroderma, for me, is how the disease can basically change you 100%. And, I never know if my internal organs will be affected by scleroderma. Thankfully, up until now, they haven’t. But, due to the medication that I have to take, there is the risk that my kidneys could fail.

I’m scared that I am not going to live past 35.

Scleroderma makes working difficult. I would love to be able to make more, because I mean no one can survive on a few hundred dollars every month.

Also, given that the doctor never said I could not have kids, I’m scared that if I do want to have a child someday, how am I going to support him or her? I know that my sickness most likely won’t be passed down to my child, but it is more likely for my child to get it. I am scared for that as well.

Do you think having scleroderma has affected the way you approach life or new things?

Yes, growing up, I didn’t really want to feel different, so I would try to be as normal as possible, or at least what I thought was normal at the time.

I used to, for the longest time, be really sad about my appearance because my skin couldn’t stretch like everyone else’s. The way my lips started shrinking really affected my confidence. But now, after I had the stroke, it gave me a new way of life, especially in the way that I think. People are going to accept me whether they like me or not. I mean, this is who I am, there’s no point in hiding it. So, I kind of just take life as it goes.

With the family support and my friends, never making me feel like a burden. Growing up though, I did feel very different and lacked confidence up until three years ago, when I fully started to love myself and fully accepted what my life and my new normal was going to be.

I actually had two strokes, back to back, because of the APS. After my second stroke, I was like you know what, I’m here for a reason. God did not let me die, so I might as well start living my life and loving myself because at any moment it can be taken away from you.

And I mean, honestly, it was just the thinking in the way that after seeing my parents in the restroom crying because you know, you don’t realize how fast your life can change. You really have to learn how to appreciate every little thing. It was kind of just like a wake up call for me.

What medications have you taken, or what treatments have you done?

I have to take prednisone, but that’s been a very difficult medication to control because it is a steroid. I always have to go to check ups to make sure that I am in the correct weight, so I am not underweight or overweight for my age.

I take gabapentin for nerve pain, even though it does nothing for me.

The new medication that they do have to check regularly is the warfarin, a blood thinner. I’m taking warfarin because of my APS. Due to that medication, I have to be on a low green diet, and I have to get my blood work checked once a month.

A new therapy that I am on right now is hyperbaric oxygen therapy, which is supposed to help me heal my wounds faster as it creates more oxygen. As a result of this therapy, I’ve noticed that my skin is less dry and way more stretchy, and my wounds also heal better. Due to the scleroderma, I used to have to use white patches on my hand, and I’ve seen those start to go away. It did take a while to get this oxygen therapy approved from the Medicaid because it was like $5,000 every session.

Also, my family and I, growing up really did try to look for other solutions versus just taking 20 pills. We’ve gone to other countries to learn about natural medication, and we tried a lot of different things. Sadly, they would only help me for a few months.

At the end of the day, it is what it is. I still have this sickness, and I just have to learn to control it.

Kimberly in a wheelchair and cast because of a scleroderma-related wound on her foot

Have you met anyone else with scleroderma?

No, it does not run in my family. I was just the lucky one. I have seen people with scleroderma online, but I haven’t met anyone personally.

Through my Instagram community, I have made friends living with scleroderma. It made me not feel so alone because they understand what it’s like to live with scleroderma.

Do you have any goals or dreams for the future?

Yes, I really would love to travel a lot more and share my story. You know, to let people know that, even though maybe growing up it can be very different, even though you live a totally different life, you can still do everything that you want. You’ll just have to take a different path to it, but you can still do it.

I just really want to help inspire and motivate people. Growing up, autoimmune disease was not as common as it is now. Just growing up with that was difficult, but never be afraid to be yourself.

@strong_selflove

I started the Instagram page @strong_selflove, and that has really helped me. I would be more than happy to let everyone know that my DM’s are open, and that I am there for them, because I had no one to look to growing up.

There’s always another option for you. Whether or not you have family or friends that can support you, there is always my community, and there is the autoimmune community.

FOLLOW KIMBERLY

July 24 2023

Sandra Nunez

sclerounited_ppavrw Issue 1 Florida, Modeling, Nevada, Parent, Single Mom, United States

Florida (United States)

SANDRA NUÑEZ

Scleroderma Stories Issue 1

A photo of Sandra showing her hands

When were you diagnosed?

I got diagnosed in 2002, but I feel that I have had scleroderma my whole life. At the time, my kids were five and nine years old (now, they are 23 and 27). I was living in Las Vegas as a single mom.

My hands were swelling up, and my joints were hurting. Once diagnosed, I got sick hard and fast. I had gangrene on both hands and almost lost four fingers. The doctors had me on a lot of medicine.

I thought, that’s how my life was going to be, and then I’ll die. I had depression and anxiety – a breakdown.

Sandra with her daughter, Yvonne (right), and her son, Michael (left)

How has your outlook changed since then?

Eight years ago, I had a life-changing moment that caused me to get off my medications. I returned to working out and won a modeling contest five years ago. I became a body painted model at 49 years old and have done many shows since then. I model often for print.

In the midst of my illness, I went to college and received my Bachelor’s Degree.

For the past four years, I have volunteered for Guardian Ad Litem. I advocate for foster teens. My kids and all of the foster kids in the system are what drive me.

I am no longer depressed or anxious. For the past seven years, I have had a blog on Facebook called “Living La Vida Scleroderma”.

Could you please describe that life-changing moment and how it motivated you?

It was a religious experience, so personal. Once I got off my meds, my mind was clearer, and I started feeling better. As for modeling, I’ve been modeling since I was 18 years old in New York City. Once my mind became clearer, I returned to it.

Having my blog has helped me motivate my scleroderma community to not give up. They are what motivated me. I got tired of reading about people feeling like their lives were over.

Because I was physically fit before scleroderma and I had been a certified aerobic instructor in the past, I knew all of the psychological benefits of a healthy lifestyle. That also motivated me to start working out again.

How has scleroderma’s effects on your appearance affected you and your confidence with modeling?

Being a body paint model is what helped me tremendously love and see my body in a different light.

When I first got sick, I had a hard time seeing my face and hands change. I was on a medicine called thalidomide that loosened my skin. My face became looser as well, moving from Las Vegas to Florida.

When I got body painted, all people saw was the art. This helped me to see myself in a different light.

Once I found something I love again, it caused me to exercise to be fit for model gigs. I got to the point where I don’t care what my hands look like. I accepted the change. Most people who know me didn’t notice my hands until I told them.

What kinds of doctors have you seen, and what medical workups and treatments have you had?

I have seen a cardiologist, rheumatologist, G.I. doctor… I haven’t had any other treatments. Other than thalidomide, they tried methotrexate; but, it was not good for me, and that was it.

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

To not rely solely on what doctors say. Do your own research. A positive attitude can go very far. Don’t dwell on what you once were able to do. Find love and passion in something new.

I also want to share one more thing. I know I am very sick; I don’t pretend that I healed myself. I also don’t think that if you do what I did, you’ll get better. I just think that psychology and mental health play a big part in helping us cope and find other things to focus on.

Sandra with her pug named Max

July 24 2023

Jovana Placido

sclerounited_ppavrw Issue 1 Juvenile Scleroderma, Parent, Texas, United States

Antonio, Texas (United States)

JOVANA PLACIDO

Scleroderma Stories Issue 1

Could you please tell us a little about yourself?

I am 36 years old, and I was diagnosed with scleroderma in 1997 at the age of 14. My pulmonary involvement started at the age of 17, and it has been quite a journey.

I am a huge advocate for the scleroderma community. My hobbies include decorating and coordinating events and fundraisers. I have also traveled to several different places to share my story with others. I truly enjoy spreading awareness, because it is so important. If I can talk to at least one person a day about this disease, then I’ve done my job. Everyone needs to know about the signs and symptoms and be aware.

I was born and raised in San Antonio, Texas, in which I still reside. I am a wife and mother to two amazing boys. My family has been such a huge supporter of my journey. In our culture, family gets involved in everything, and they have always been so involved with my awareness efforts. I’m so blessed to have them, and they are a huge reason why I don’t give up.

Jovana with her husband and son

Jovana with her older son

What led you to take such an active role in spreading awareness?

I decided to take an active role in 2008 after my life-saving stem-cell transplant. The treatment really saved my life, and I felt I needed to do more with my second chance at life.

I have been nonstop ever since. I have made so many amazing connections and have shared my story with so many people.

Jovana in June of 2019 at a rally to get research support from Texas state representatives

Could you please share what led to your diagnosis?

I was just 12 years old when my symptoms started. I played softball, and I was a great pitcher! My hands were beginning to feel stiff and painful, and they were swollen. My skin was tightening, and what I now know was Raynaud’s was horrible for me. I couldn’t grasp the ball to throw, and I couldn’t tolerate being outdoors. Due to my joint pain and fatigue, I wasn’t physically able to keep up with my teammates.

What effect did scleroderma have on your childhood?

It had great effects on my childhood! I couldn’t play the sports I loved. I missed a lot of school, and my teachers didn’t really understand.

My friends didn’t understand either, but there were two friends who absolutely became so supportive and never judged. They were really there for me. In fact, I’m still friends with them to this day.

I didn’t get to do much of what other children did because I mostly stayed indoors and was too tired to enjoy anything. When my hands became affected, I knew I would never be able to play sports again.

How have you made changes to your lifestyle or mindset?

I’ve had to adjust to so many things in my life! If it’s too cold or even too hot, I stay in and preserve myself. That means having to miss out on things with friends and family, and they are all very understanding.

I also had to pay attention to what foods were causing me more harm than good and eliminate those.

This is the tough one, but I’ve had to learn to say no to others when someone needs my help. I am a people-pleaser, and I enjoy helping others in any way. But, it takes a toll on me. So, I don’t always rush to offer my help with weddings, showers, yard work, etc. anymore.

I’ve developed so much patience throughout the years! People ask me how I can still smile and be calm even through my bad days, and I just say “it’s just a bad moment, and tomorrow will be better.” The one-day-at-a-time mindset is so important.

To relieve stress, I love to listen to music, read books, take walks, and take naps.

Jovana at the beach

What is the most difficult part of living with scleroderma?

The unpredictable days! I can feel amazing for half the day and then feel like a train hit me for the second half of the day. Not knowing how my days will impact me is so nerve-racking.

I get emotional sometimes because I’m a person who loves to plan ahead and commit to an agenda. Knowing that I don’t have control over that makes me feel down sometimes.

Jovana in her wheelchair

Could you please describe the events leading up to and following your life-saving transplant?

The events leading up to my stem cell transplant were quite scary. I felt like it was a race against time, and I needed to do something fast. In 2006, I started to deteriorate drastically, and it got harder and harder for me to breathe. Being on 24- hour oxygen and in a wheelchair was so hard on me and my family. I didn’t have the energy to do anything – to be a mom and a wife and do the things that I should be doing to manage the household.

Although I didn’t do all the testing for a lung transplant evaluation, my rheumatologist already knew I wouldn’t meet the criteria for a lung transplant, so we didn’t look into that as an option. We found out about stem-cell transplants being done for scleroderma patients in Chicago, and we just knew that was our chance. In May of 2006, I flew to meet Dr. Burt and did several days of testing: tons of blood work, cardiac testing, pulmonary testing, and more. He sent me home to wait for insurance approval.

It took about 6 weeks for the call, but my insurance approved this transplant for me. I immediately started crying and knew the hard part was about to begin. The process was very long, and I needed to talk with my family about taking care of my son and my household while I was gone. We immediately started holding fundraisers and asking for help. It’s hard to be able to buy necessities and pay for room and board in Chicago while you’re still paying for your own house back home. My parents willingly stepped up to care for my then 8-year-old son.

No amount of pain, lack of energy or breath, or chemo side effects will ever match to the pain I felt from having to leave my son behind to go and fight for my life. THAT was the hardest part for me. My son knew I was his superhero, and he knew I was going to be okay.

I arrived home on December 18th, 2007 after being away for almost three months. I was 50 pounds lighter, had lost all my hair, and was still in a wheelchair. I didn’t look the same, but I knew I felt ready – ready to start getting stronger and getting back to a normal life. Or at least try!

Slowly, I was able to consume solid foods again, and I was able to maintain oxygen levels on my own. No more oxygen and no more feeding tube. I was starting to be more mobile because my energy was coming back!

I went back to work six months after the transplant. I needed to start to contribute to feel some sense of normalcy. I met with a lady named Debbie with the foundation who was leading the support group in San Antonio. I started attending meetings and meeting more patients like myself. Debbie needed to step down and take care of her sick mother, so I stepped up to run the group as best as she did. It has been 12 years now, and I’m so excited to serve my state of Texas.

Photos that show Jovana’s journey of getting a stem-cell transplant

What else did this “second chance at life” change for you?

This second chance at life changed me as a person. I have more compassion towards people, I have more patience with others, I love harder, and I have a passion for helping others.

It has allowed me to see the good in people and to always lend a helping hand. You never know what someone is going through, and you could be the only person who helps them. This new perspective on life is important to me. It’s my way of giving back as a way to say thank you. My faith has really made me strong, and I will never stop doing what I do best.

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

My last piece of advice would be to never give up and to always fight. We are given an opportunity daily to do the right thing, be the strongest we can be, and make someone smile. Happiness begins with acceptance, courage, fight, and love.