Male

July 24 2023

Gregory Cohen

sclerounited_ppavrw Issue 4 California, Fitness, Male, United States

Studio City, California (United States)

GREGORY COHEN

Scleroderma Stories Issue 4

Please introduce yourself

My name is Greg Cohen. I live in Studio City, California. I’m originally from New York, but I moved to California about 17 years ago. I’m a former college athlete, and now I work in the fitness industry. I run marathons – I’m actually heading to the London Marathon tonight! I have a culinary background, and I am finishing up my doctorate right now in public health. I also have a cat named Popsicle, and I post pictures of her to my Instagram and call them the Nightly Popsicle Pics, which everyone tends to like!

What were your earliest symptoms?

I’m 44 now, and I was diagnosed at 36. I should have been diagnosed 2 to 3 years prior to that because I began showing symptoms. My doctor at the time wasn’t 100% sure and didn’t want to make a conclusive diagnosis.

One of the symptoms I started developing was numbness in my hands. My hands always felt swollen, and then I started developing digital ulcers on my fingers. I had a lot of Raynaud’s episodes with hot and cold changing the color of my hands. I also had some gastrointestinal issues, such as heartburn and acid reflux.

What was your initial reaction?

When I was first getting the symptoms, I had no idea what was wrong with me. I remember the day I went to urgent care. It was a Sunday morning, and I was driving to go teach a fitness class. My hands felt like they were blowing up like a balloon, which was really odd. The PA at urgent care diagnosed me with bilateral carpal tunnel syndrome, which was weird. Then, they sent me to a neurologist who told me I had a high ANA, or antinuclear antibody, level and that the next step would be an electrode test, which was supposed to be very painful. I freaked out and said, “No, thank you,” but they sent me to the rheumatologist anyway, where I was diagnosed with Hashimoto’s.

I’ve had an underactive thyroid since I was about 20, but this was more of an autoimmune diagnosis. I was stubborn and didn’t listen to my doctor even though she wanted me to come back. Three years later, digital ulcers ultimately led me to go back to the doctor where I was finally diagnosed. At that point, it was a shock.

My wife at the time was with me. When I got the diagnosis, we both started crying. I’d briefly heard about scleroderma from a friend prior to my diagnosis, but I didn’t put it together. My initial thought was that my life was coming to an end… like a death sentence.

The doctor specifically told me not to Google stuff online. What did I do? I Googled stuff online. That definitely made it worse. I did start reaching out to some support groups in the area, such as the Scleroderma Foundation. At this point, I was still crying on the phone–this was all within the first week of my diagnosis. Slowly, though, I started to put things in perspective.

How have symptoms affected you?

I haven’t developed any more symptoms since my last diagnosis. In my last two echocardiogram exams, I had borderline high arterial pressure. My doctor’s biggest concern is pulmonary arterial hypertension as a complication. For the most part, I’ve been dealing with the gastrointestinal stuff, the digital ulcers, and day-to-day fatigue. The ulcers are probably the worst to deal with. They can take up to three months to go away, and they’re right on my fingertips, especially my middle finger. Being in fitness, I am using my hands a lot, which makes the pain annoying.

After I was diagnosed, I decided to become an advocate and inspire others in the community to take more proactive measures to protect their health.

I still do everything that I’ve always done, although things are a little bit more challenging.

For example, my ex-wife was over a little while ago because I’m packing to go to London and needed help buttoning my shirts. Sometimes, the skin on my hands becomes really tight. My hands haven’t really curled too much, but it still makes doing fine motor skill things challenging. Another instance is when I’d go to a local coffee shop and a pen would be left on the counter for me to sign a receipt. I couldn’t really pick the pen up off the table with my fingers, so I’d literally have to roll the pen off the counter, catch it, and then sign my receipt.

People don’t really think too much about the appearance of my face. I’m really self conscious about the ulcers on my fingers, though. I’ll wear Band-Aids to protect the area. But people ask, “Oh, what’s wrong with your finger?” And then I go through the regular explanation of what’s going on.

How did you get into the fitness field?

I wrestled in college, and we’d always have to run to get in shape. I was always in the back with the heavy weights. I was a sprinter, so I played sports like soccer and lacrosse. Whenever we had to do long distance runs, like 4 or 6 miles, before practice, I hated it.

When I got out of college, I needed to stay active and involved in fitness. I wasn’t very committed to going to the gym by myself. That actually got me into teaching fitness. I started teaching kickboxing when I lived on the East Coast. It became addictive in the sense that I really enjoyed it. It kept me in shape, and it also made me feel good since I was directly helping other people.

At this point, I had a full time career in the hospitality industry. After college, I went to culinary school and managed restaurants, then moonlighted as a fitness instructor. I think part of the reason I was diagnosed with scleroderma was that I was running myself into the ground. I’d wake up at 5, teach fitness classes, go to work, be at work till 10 at night, and do it all over again.

Eventually, I wanted to make fitness and focusing on this sense of health and wellness a full-time job.

Greg with his medal from the London marathon – his 8th full marathon!

Why did you begin running marathons?

I became interested in running after my diagnosis. I was trying to find a way to raise awareness for the disease because, as we know, there’s not a big celebrity face associated with it. I briefly considered doing something from an advocacy standpoint by writing articles, for example. But, I began running races to inspire others to be more active.

Many patients with chronic illnesses, not just scleroderma, automatically throw their hands up and say, “Well, I can’t run anymore. I can’t do this.” My goal was to inspire people to stay active to reap the tons of benefits that can improve daily quality of life. Some patients will email or message me saying, “I can’t run a marathon.” My answer is: you don’t need to run a marathon. You can run a mile or walk 3 miles as long as you don’t give up on life.

What are your other hobbies?

It’s mostly fitness, sports, and food. Things like stamp collecting or butterfly hunting aren’t really on my list of passions… but I do love good food and wine!

Greg with his Camp Run Happy team

What accommodations have you made?

I haven’t really had to adjust my cooking since I have mobility in my hands. I can hold knives and all that. I’m just more mindful. But, I try to eat foods with little to no gluten to cut down chances of inflammation.

I’ve definitely made adjustments day-to-day. For example, if I have an ulcer on my finger, I know I can’t do a pushup with my hands fully extended because the pressure on my finger is really painful. I might end up putting my hands on a set of dumbbells or making a fist, which makes it easier to do a push up.

I sometimes have gloves and hand warmers with me when I run races because my hands and my feet will go numb—even if it’s 55 degrees for the start of a race, which is a great temperature!

I definitely feel like these passions have helped me deal with my scleroderma in some capacity. For example, I can tell the difference in my body when I eat right. I know how I feel when I’m not exercising versus when I am. Also, from a mental health standpoint, it’s helped me maintain a positive mindset in the “life’s not over” sense, which improves my ability to keep doing things.

I try to practice a bit more mindfulness and meditation—things which I never would do before. These things keep me generally more relaxed and less stressed.

Photo: Aubrey Anne Photography, aubreyannephotography.net

How did your friends react?

Initially, my friends were worried, especially because they didn’t know anything about the illness. They’ll regularly ask me how my health is.

People that don’t have scleroderma don’t really understand how it affects you. That’s the biggest challenge. Caregivers and friends have an idea of the illness and are really supportive, though. They always push me and motivate me to try certain things. I’ve faced adversity before, and I know that I can overcome certain things. Having people around me to support me really helps me get through those difficult times.

Has scleroderma impacted your other relationships?

That’s a hard question to answer. I don’t think I’ve had to adjust my relationships. It’s just if I’m dating, it’s a conversation that comes up early on. I’m very up-front about my illness. People take a step back sometimes because they don’t want to get involved with someone who’s sick or they’re a little cautious at first.

I try to choose relationships where people understand that I don’t live my life really that much differently than I did 10 or 15 years ago.

What medications have you tried?

Thankfully, I do not have to take too many medications.

I have one for my thyroid (a prescription-based one), Pepcid for my gastrointestinal stuff and acid reflux, and a blood dilator called Diltiazem to improve blood flow to my hands so that I don’t get as many digital ulcers. I don’t have any side effects from them. Pepcid feels like the most beneficial. I can’t really speak to how the blood dilator works since I still get ulcers.

My list of expenses includes my medication as well as paying whatever my insurance doesn’t pay for during trips to my doctor every 3 or 4 months.

Follow @gregory_cohen on Instagram!

Have you found scleroderma communities?

I am in a bunch of Facebook groups, which I participate in every once in a while. I used to go to support group meetings, but not anymore. Part of the reason is that I find them to be somewhat depressing. I voiced this opinion to the people who run these groups. I do try to share information about my races and other advocacy, though.

I joined these groups right after I was diagnosed. With the support groups, I went to their educational events pretty much right away. I began to meet more people—both in person and virtually—as we were invited to join these groups. They’ve helped me better understand that if I’m going through something, someone else is too. There’s a community to talk to, people who understand my day-to-day better than my friends might. Occasionally, if I have questions that someone might know the answer to, I can get added help.

The first interaction I had with any of these groups was with one of the leaders of a support group, which would have been when I was first diagnosed. They would reassure me that the world’s not over – that there are people who have been living with the disease for 20, 30 years.

When I met people in person for the first time, it was definitely more awkward. The first thing I did was go to a patient education day at a local hospital with my now ex-wife. Everyone approached her because they thought she had scleroderma—women have scleroderma more often than men. Now, though, people will just randomly contact me via social media.

What are some lessons you’ve learned over time

I think, in hindsight, the biggest lesson is just taking better care of myself. When it comes to scleroderma, no one knows what the cause is or what triggers it. Maybe, had I taken better care of myself earlier, I might not be in this situation. I just didn’t really have an idea of what the illness was.

I also wish I had learned to manage my stress earlier. Just stress itself can make any situation worse; knowing how to deal with stressors early on would have helped immensely.

Greg and his Camp Run Happy team after a 4-mile run at Huntington Beach

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

Think about what you can actively do to make your life better. NEVER assume that your diagnosis will prevent you from doing what you put your mind to!

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

Erion Moore

sclerounited_ppavrw Issue 3 California, Male, Oregon, Sports, United States

Portland, Oregon (United States)

ERION MOORE

Scleroderma Stories Issue 3

Please introduce yourself

I’m from California (the Bay Area), but I live in Portland, Oregon. I have a service dog named Coco, and I have been diagnosed with scleroderma since 2008. It affects my joints, so I have a lot of mobility and range of motion issues. But I’m still pretty active because I do adaptive sports. I like watching sports and comedy. I enjoy boxing, basketball, and football – both pro and college.

What adaptive sports do you do?

I actually played college basketball and did some track. Then, scleroderma took that away because you need to have control of your whole body to play sports, or at least to play the able-bodied sports. I was no longer able to play those, but I did switch over to adaptive ski. It’s hard because when it’s a sport, you grow up and play it. You love it. You’re good at it. You want to be able to play all the time.

But luckily, I was able to find a hobby, a sport still, such as skiing and table tennis to fulfill that void and still get a sense of activity, recreation, and such. I think I was trying to fill that void and find another physical activity to replace it. It’d be like if you were a pianist, and then you were able to do another instrument. It may not be the same, but you’re still able to make noise.

And I do some movement activities – sometimes yoga or boxing, actually. I don’t actually fight, but I do punching just to keep my body moving. I think there are around 26 paralympic sports, and I’ve probably tried all of them. Or at least 25. I had to do something. I was losing my mind not working or going to school. There was a point where I did water aerobics three times a week. In addition to boxing, I did lameca (Filipino stick fighting) one day of the week. Then I do pilates and yoga. That was my life for a while.

I think water aerobics is probably the most effective of everything I did. There’s resistance, but not too much. It can hold you up. So water aerobics was definitely key. I recommend water aerobics to a lot of people, especially as you need to get out or you gotta get your body going.

When were you diagnosed with scleroderma?

I was 25. Well, I had it two years prior, which was my last year in college, but it didn’t get diagnosed. I was having mobility issues, and then over the next two years with different doctors, we started trying to figure out what was going on. Then, a couple of months after I turned 25, finally we got it right.

The very first symptom I had was acid reflux from GERD, but I didn’t pay attention to it because I was just eating a lot of food. I was still thin: 6’6” and about 200 lbs, so I wasn’t big. I tried to eat a lot of food to gain weight. So, when I had acid reflux, the reaction was just, “Oh, cut back on your food.”

I also had Raynaud’s. I had problems reaching in the freezer. It got real bad, to where I didn’t even want to go in the freezer. And at least for me, when you don’t know why you can’t reach into the freezer, I was thinking, “Well, it’s got to be me. What’s wrong with me?” I just dealt with that issue, but what actually really got me to the doctor’s was basketball. I still played basketball at the time, but I had problems shooting. I was telling my doctor that something was wrong. I was like, “I can’t shoot the ball the same… I don’t have the endurance…”

I started taking pilates and all these other exercise classes, like yoga. Anything you could think of that’s full body and mind, I was taking it. It wasn’t working, so I finally decided, “Okay, this is beyond me now.” I went into the doctor’s one day and said, “Something’s absolutely wrong, and we’ve got to figure this out.” It was right when I said, “Look, my shoulders are tight,” that she put all of the appointments that I’d been going to together and said, “Okay, I think this is what it is.”

She brought in her colleague, and they started doing that test where they grab your skin on different parts of your body. Eventually, she decided, “Yeah, this is it.”

Erion playing basketball

How did you react to the diagnosis?

I actually didn’t take it as serious as I should have, and that’s most likely because I hadn’t heard of scleroderma. The ironic part of why it wouldn’t even make sense that I didn’t take it seriously is that the head rheumatologist came in. They talked, and he told me I wouldn’t play basketball or work probation anymore (I was working juvenile probation at the time). He said, “I suggest you get health insurance because your life is about to change.”

I kind of just looked at them. I took them seriously, but not too seriously. I had never heard of scleroderma, so I just thought “all right, okay.” He begged me for months to get concerned, but I still was busier paying off student loans.

Why do you think you didn’t take the diagnosis seriously?

There was nothing other than tightness in my shoulder that made me think anything was going to get worse. So, I didn’t really follow up for a couple months. I just thought, “Ah, I’ll get over it.” He didn’t show me pictures, and I couldn’t find stuff online at the time.

When it comes to rare diseases or anything that isn’t a common conversation, information just wasn’t available on the internet back then. You would find stuff, but you’d have to dig more into research. Now, I obviously can type in the words and get everything. But at the time, it was just the Scleroderma Foundation and the average demographics, where they’d say older Caucasian women. I really wasn’t worried about it. I didn’t see anything that made me think I would fit in so quickly.

It’s a lot to take in. I had that fighter mentality, as an athlete, that helped. There were a lot of reasons why I didn’t take it as seriously. I think it was more because I had never heard of it, and he didn’t say I was going to die. If he would have mentioned something like “You’re going to lose an arm” or “Your heart’s going to fail,” I think I would have. But he never said what was going to happen. It just sounded like he was taking the two things that I’d done a lot, which was work and play basketball, and just saying that I won’t be able to do those.

At the time, I was thinking, well maybe it’s because my shoulders would be hurting or tight. I didn’t know they would do what they have done; it became where I couldn’t even use them much. I just thought, “Maybe I’ll have problems doing it, but that won’t mean I won’t have a basic, normal life, quote unquote.”

Was there a specific moment when you realized the seriousness?

The day I took it seriously was the day the head rheumatologist called me and said, “I’m going to give you my house number. You tell me when you get health concerns.” That’s exactly when I knew.

A doctor doesn’t just give you his phone number. I wasn’t even his patient; he was the head rheumatologist. Maybe he figured I needed some trigger words. He said, “I’m going to give you my house number. You have to call me.” I realized that there was something beyond what I was thinking of. That’s when I really said I’ve got to get help. Within about a week or two, I went to a library to research scleroderma, called the Scleroderma Foundation, went to a support group…

I wish I remembered his name. I would love to call him and say, “Man, you were so right.” But, unfortunately, I forgot his name.

Erion at his graduation

How did you feel in the time shortly before and after your diagnosis?

That last year was tough because I didn’t know what was going on. My doctor had originally said it was rheumatoid arthritis. She just said, “you can’t really do much, but I’m going to give you medication, so just work around it.”

If that’s all you think is what’s going on, you just think, “Man, this thing is tearing me up.” But then, just having the doctor that stayed on me about getting insurance and taking care of myself and then, really, the medical team helped me. It’s important to have a medical team that you work well with. It’s important to have doctors who actually listen to you if you want to talk.

What is your relationship with your medical team like?

My doctors recommend procedures and medication, but they also know I’m not going to do it just because they said to. A lot of times with my rheumatologist, when we meet, she knows I’m coming with some research. She has hers, and we’ll discuss it. We’ll flip back and forth.

We’ll discuss if it’s a great option and what the risks are. We know the pros are supposed to be good, but we talk more about the risks. She knows that, yes, I want my shoulders better, but I’m not going to do some random surgery that could possibly go wrong. I would always say that the medical team and a large support team is important.

How did your condition develop after your diagnosis?

From 2008 to about 2011, my mobility started to slow down. I was starting to get the internal issues, like the scarring.

I had real bad acid reflux, to the point where I haven’t laid flat to sleep probably since 2009. It was that bad, even with medication. I also had stomach ulcers. That was probably one of the hardest things because I confused it with the acid reflux, but it actually burns holes in your body. That probably made me lose the most weight. I dropped 30 lbs in a couple of months. 6’6”, 200 lbs is already skinny, but to lose that 30 was real bad. I was also anemic.

I had finished college in Oregon, gone back home and gotten diagnosed in the Bay Area, then moved back to Oregon because of my work and health. Again, the doctor in Oregon was telling me it was more serious than I was taking it. She said, “Look, you gotta take care of these issues.” She did the same thing. She called me one day. The first time, she said she needed me to take the day off and go get some labs or something.

I didn’t listen to her, but at that time, I was starting to faint just walking maybe 15 or 20 feet. I started having that issue in the shower, where I wouldn’t last in the shower long. I got a chair just because I couldn’t stand up.

She called me later that day while I was on my way to work and said, “We got you a bed at the ER.” I just said, “ER??” I never even knew they could order a room for you at the ER. She told me I was at risk for a heart attack. My reaction was, “Well, let me go to my job and tell him this is what’s going on.” But she told me, “I don’t even think you should be driving. You need to pull over and call an ambulance.” Those were the first couple of issues.

Then all of a sudden in 2011 and 2012, I started getting very physical issues.

My fingers contracted, and so did my knees, my hips… all of my joints except my feet. My feet stayed fine, but my skin was so tight. You could see it pull from my thigh up to my chest. I couldn’t open my mouth maybe more than four popsicle sticks. My elbows contracted. My shoulders subluxed – which means partially dislocated, so it was like still on the joint, but kind of off. It happened to both shoulders; anything that happened to one side happened to the other. Anything that contracted on my left side did on my right as well. My fingers are all contracted, but my thumb and pinkies are dislocated on both hands. My elbows do not straighten either. They go probably a little past 90 degrees. I also lost more weight. In March 2012, I remember getting stuck on the bed and thinking I couldn’t get off. I thought I would have to jump off or roll off. That was probably when it was at its very worst. I could barely move.

In January, I could reach on top of the freezer, even though it was a struggle. By March, I even couldn’t reach inside of the refrigerator. At that point, I was starting to load up the sides of the doors or not put anything in the fridge.

Erion’s team at the 2011 Scleroderma walk, the last time he walked unassisted

How did you adjust to the changes in your mobility?

Back then, I didn’t know about the adaptive stuff that I’ve put all over my apartment recently. At that time, navigating yourself and without the internet, you don’t know all of this. Some of this information probably existed online, but who’s telling you, right?

A lot of the physical or occupational therapists didn’t say anything. They didn’t ask, “How are you getting in your refrigerator?” Occupational therapists do think about activities of daily living, but at the time, I didn’t know I could get home occupational therapy. Even though I was able to get out of the house, I really wasn’t safe outside of the house.

And I didn’t know that somebody should have said, “Hey, what’s it like living in your apartment by yourself? Are you able to do these things?” No one really mentioned it. I just started doing stuff alone. It was pretty tough, but I was learning everything because I’m just someone that’s going to figure it out.

What was the hardest symptom?

The contraction. My joints, my hands starting to curl up. If you open your hand right now and close it, you can do everything you want with your hands. Now, just ball it up like you’re holding a microphone. That’s what my hands are stuck at. And now try to do the same thing you would want to do, like scratching your eye, digging your nose, whatever you have to do. This is what your hand is.

Sometimes I would tell people – honestly not mad at them – but I’d tell them, “Hey, you want to try what it’s like to live with my hands? Let’s do this.” And we’ll try something, and I’ll see how long they can last.

I would say, of all the joints, it’s my shoulders. I want to be able to reach out or reach back, but I can’t. I can be creative without using hands, and I can be creative without straightening my elbow. I’ve got long arms, anyways, being 6’6″. Not being able to use the shoulders is probably more crucial than any other joint that I need. And you’re talking to someone that’s athletic, someone that lived alone, a germaphobe. I like things cleaned a certain way. I like all that stuff, but I can barely do it.

Have you gotten more used to your lack of mobility over time?

I don’t think I’ll ever get used to it. There is no replacement. But I won’t tell other patients, just to make them feel better. Seriously, it’s hard for a lot of people.

When I went to a hand surgeon in New York, he was only doing fusion, which basically means he would fuse your fingers into a certain position. If you straighten the index and bend it at the big knuckle just barely, that’s the finger. That’s the position your fingers would be locked in. It’s probably better for some people. But me, I’m just always thinking, well maybe in five years some doctor will come out with some surgery that doesn’t require a permanent fix.

When the doctor looks at the surgery, he always asks you that silly question, “Why do you want to do it?” I couldn’t believe he asked. I knew it was a part of his job, but I just said, “Come on, doc. I need my hands. These hands are waiting for love and knocking people out.” I was joking, but he loved it. Then I explained, in all seriousness, that I need these hands. I’m a person that uses my hands for everything. I want to play sports. I clean a lot – or used to – and now I can’t do it. I started having to get caregivers. I don’t want to rely on people. I like living alone.

I mean, of course everybody wants their hands, but if you’re a bodybuilder, you may not need your hands. There’s different exercises you can do to still get that strength. Maybe, I don’t know. This was all before I got a stem cell transplant.

Could you share more about your stem cell transplant experience?

I found out about the transplant around 2010, but I didn’t have the right insurance to cover it. I had to wait until I got social security. I waited 2 years. By the time I got there, I was probably down to 125 lbs. I could barely move, couldn’t look up, couldn’t look to my left or right, couldn’t open my mouth, couldn’t open my fingers. I got accepted that summer.

In October, I went out and started doing the outpatient, where you get your labs and do overnight chemo. All of that was actually pretty fun. It was in Chicago. It was cold, but the staff was great.

I had different people come visit me in Chicago. Some flew. My grandmother took a three-day train because she’s scared of flying. I told her I wouldn’t have taken a three-day train anywhere, but that’s grandma. She came up, we had fun, and then she stayed with me until the day I had to go into the hospital.

I did chemo for about a week. It was six days. On the seventh day, which was a Tuesday morning, they put back my stem cells. Two days later, Thanksgiving 2012, I was able to move my wrist. The skin had started to loosen. I also have vitiligo, so I was starting to have white spots all over my body. That went away too. Now, people don’t even know I have vitiligo.

I would say the stem cell transplant was the biggest change in my life. I was skin and bones, and I needed a lot more help. Over time, I started doing water aerobics, yoga, boxing, lameco, skiing… I’ve tried every sport that you can think of. I think that’s what helped me gain mobility.

Sometimes, I can travel with the walker instead of the scooter. The transplant stopped the progression of the disease. But, by that point, whatever damages you have, you’ve got to deal with. Some of my internals got a lot better, but if I would have had the transplant prior, then maybe my joints wouldn’t be in the condition they are in today. That’s life.

Erion with his stem cell transplant donor

How did scleroderma impact your ability to work?

I stopped working for a while because of it. I liked working in probation. I liked working with offenders. It could have been partially my size for a while, but I didn’t really have to deal with the physical part of it. I never had to tackle anybody. Sometimes, size is an advantage, where people think twice about that. But with my hands, elbows, hips, and back the way they are, I’m just the target. I can’t stop any of that, if it happens.

Scleroderma takes away some of the jobs you may want to do, depending on what work you enjoy. I’ve also done other labor-type of work that I enjoyed. Now, I wish in the years from 2010 to today, I had focused on learning computers. They’ve got all kinds of speaking apps, and I can actually type pretty well. I just didn’t learn Microsoft in that whole time. I never learned Office or anything.

Did scleroderma affect your confidence?

It’s not that bad. Before the transplant, I was just staying at home, so there was nothing to worry about. After the transplant, I thought I would do some old Benjamin Button type of thing, where things reverse, and I exercise and start looking like the old me. But, I’ve accepted that part – that I’m not going to be that same person.

So the confidence isn’t too bad. I think a lot of it is that I’m a strong advocate for myself. Also, a lot of my friends and the people I met before the disease stayed with me. So that’s key, right? It’s good to have the same people that are with you through this journey.

When I moved back to Oregon, I didn’t see people for years. I didn’t travel much. Some people had not seen how bad it affected me. They didn’t know I ended up in the scooter or wheelchair, or that I dropped down to 130 lbs, or that I could barely move. Some of them didn’t know because over the phone, or even if you did see me in person, I didn’t act differently. I wouldn’t talk about how bad things were going. It wasn’t like I was hiding it. It was just that if I was able to do the daily living, if I was still able to do most days, then there was nothing to talk about, in my opinion.

So I would say it didn’t take my confidence too much. I’m probably still just as bad as I was before the disease.

Did you have a lot of support from the people around you?

Yeah, definitely from family and friends for a long time.

I would say coworkers are different. I don’t want to put someone on blast if they happen to read this, but there were people that didn’t believe there was something wrong. Then they saw me later and were super apologetic. They were like “Oh man, I didn’t know that it’s as bad as you said it was” or “I just couldn’t tell” and so forth.

But luckily, the family and most of the close friends thought, “I know this guy. He wouldn’t want to lose weight. He doesn’t want to not hang out.” They definitely were part of keeping me confident and feeling “normal”. If you talk to them, I was more of their console than mine. They were usually calling me, feeling bad because, as they would tell you, I never complained.

As a matter of fact, at one point, nine of my ten fingers had split to the bone at the knuckle. You could see the bone cap, and I still never talked about it. I never not told anybody. If you asked me, “What’s the body looking like?” I would tell you right from the beginning. But I wouldn’t just bring it up and make it a conversation for no reason.

This was the kind of stuff I was dealing with. But when they’d call me, I’d say, “Oh, I’ve been good, what’s going on?” And I meant it. Everything was good. Things were reciprocated. If I talked to them and worked with them to do their thing, then if I needed that, they would return that favor. That’s how I felt. We kept it going and stayed strong.

I wasn’t a depressing conversation. And I don’t mean that in disrespect. But they didn’t call and worry that it was not going to be a good, fun, or normal conversation. That’s some of the things they liked. We would still laugh, get mad, talk, whatever we normally did. Nothing verbally changed. Things stayed constant. Things were the same. Consistent. And I liked that better. I didn’t bring them down. Everything pretty much remained the same with friends and family. I may not travel as much, but we still talk as much, we still guide, or I still support.

Erion with his former teammate in a chance meeting at the airport

How has the pandemic impacted your life?

It definitely changed things. I don’t have a vehicle yet, and I rely on paratransit, which is for the disabled. Depending on the county or state, sometimes you don’t get a ride because they say, “No, we’re only doing medical appointments.” That becomes difficult if you want to go somewhere other than the doctor’s.

Then socializing, obviously. You have to worry, “Who was that person hanging out with?” Even if I stayed home and stayed to myself, I have health home care workers that come a couple of times a week. I don’t know what they’re doing outside of here. Some of them take corona very seriously, others say they never put themselves at risk, but they’re also not not trying to. That becomes a concern because I can’t control what people do away from me. Some people, if they believe they won’t get it or they can live through it, then they’re going to be around people that probably shouldn’t have that.

If I go to a friend’s house, I’m definitely in the backyard with the mask on, and we social distance. We literally social distance. If we order pizza, I get my separate box, and they drop it off at this spot. We’ve figured out how to keep our distance from each other and just sit with our mask on in the backyard or at the patio area, keeping the distance. It’s still a low-risk, but there’s still the social aspect.

I usually travel in the summer to visit family and do some cycling. I wasn’t able to do either one of those. And skiing, too. I like winter activities. I don’t think the sport itself would be difficult, but in certain places, the hospitals are filled up. If I get hurt, I’ve got to be worried about if there will be a lot of COVID patients at the hospital and if they have room.

Then travel, too. If I’ve got to fly to a different state, how safe is flying right now? So I would say it takes away some of that activity that I really like to do, such as visiting family or friends and then skiing in the winter. Those are the biggest barriers or obstacles that have been happening because of COVID.

Erion on a ski bike, which was new to him

What are your goals or dreams?

I want to continue to be physically active. Like a lot of other patients who have the physical limitations, there’s no prognosis on whether you’ll get better or stay at your current condition.

My stem cell transplant stopped the disease’s progression, and I’ve made some improvements – not necessarily all the way, but until there’s a definite no, I’m just going to keep on trying. I see my doctor around once a year, and each time I’ll tell her, “What have we found on muscle? Tissue? Ligaments?” I’m looking across the world for something.

I also want to get better at skiing. I don’t know if I’ll ever be able to go on runs on myself, but I want to be able to just do some runs without worrying about getting hurt. I would say definitely my number one goal is to try to gain more mobility and to stay active while doing it.

Another goal is to just serve the community. I still want to work in the criminal justice field, whichever way I can get around. I like working with justice-involved individuals.

Erion’s new favorite place outside of the basketball court: on top of Mt. Bachelors in Bend, Oregon, where he does adaptive skiing

What helps you stay motivated?

It’s hard to be optimistic for different reasons for different people, but that’s what keeps me motivated. Like I said, my friends talk to me, and I hear that, “Man, I would never have been able to be in your situation,” or “I come to you for problems when you should be coming to me,” or “Erion, I’m watching you go through this.”

So that’s the motivation, right? If I could do anything for somebody, that’s to be support. I’m not wealthy, I don’t cook as much, so I can’t do other things that I probably used to do when someone needed help. But talking is “Oh, I could do this.” I’ve got to stay positive for that.

I think long and wide, as I call it. I’m thinking long term, and I’m thinking multiple outcomes in the meantime. I want to be able to walk upright without assistance. That’s my long-term goal. Then wide is “Do I keep going to rehab?” “Do I walk around my apartment upright?” All of the things to get to that point. That’s why I stay active. Because walking unassisted is one of my goals. We don’t know if I’ll ever get to it, but as long as there’s a gray area for me, I will try to get to it.

It’s hard to stay active. Sometimes, you just want to sit there, and you think “You know what? I don’t feel like doing this.” I’ll put challenges on myself, where usually someone else makes me do it. That’s why it’s one of my goals. When you’re not active, and then you do it, you feel the difference. When you feel at the place you want to be, you feel active, and you feel like you can do more things that you want to do. When you feel good about yourself – your physical self – then you start doing more things. Or you try to, at least.

Could you please talk about your experience with support groups?

I am in some scleroderma support groups, and I’m also in the local one, which is now all virtual. I would say by the time I actually started using those and Facebook, I was already at the point where I knew what I needed to do or I was already doing it.

But, it was always good to talk with other people who are dealing with the condition. Obviously you’re connected with other people who are going through the same issues, right? You can say, this is the kind of thing I’m dealing with, and they’re like, yes, me too. And they’ll share how they navigate. It was good to network with other people and discuss things you’d like to change or things you need to know more information on.

I also felt good helping people who were newly diagnosed or who had figured out how to get something done. For instance, wound care. It was good to talk to other patients about things I did or what they did and try different methods.

Like I mentioned, I went to my first support group in San Francisco after my doctor gave me his number. It was all older women. I didn’t have a problem with it, actually. I definitely enjoyed my time, which is why I kept going. We’re getting different perspectives and different conversations.

When I moved to Oregon, it was a little more mixed, with younger and older. I think maybe one other guy came. There weren’t really a lot of men that were coming. Now, because of the pandemic, we’re virtual up here in Oregon. And I went to the national conference. That was big because I was seeing four or five hundred people all dealing with the same condition.

Did you enjoy the national conference?

Yeah, it was good. You started seeing more men, you started seeing younger people, African-Americans. Whatever you didn’t see before, that you didn’t even know was around, now it’s everywhere.

There were so many workshops. Obviously, you still do your own research, but now there were actually workshops on social security, self care, loans, and everything else related to scleroderma. There was even one for the caregivers, whether it’s partners or actual caregivers. They just had workshops for like three days, so that was fun.

It rotates across the country every year. I think my first one was in Boston. I got to go to Boston, hang with other patients, and learn more that way, so it was really cool. Whenever I take a trip, whether for work or family, I’m doing something else in that city. It’s great to just see them, but I’m also going to explore.

Do you enjoy travel?

I do. And I regret not traveling when I was healthy. I really was a workaholic. Anytime I had an extra day, I was like, “Hey, you want to work another day? I’m doing it.” I didn’t realize how much I’d like travel because I hadn’t traveled much before college, other than for sports.

Now when I travel, I’m in a scooter or I use a walker. I have to have assistance. I have to find the right hotel… I would’ve loved to have been my old self, 6’6″ and walking down Italy or Austria above the crowd. I can see over everybody and know what I’m doing, versus in a scooter, it’s always, “excuse me!” It would have been different then. I’m enjoying traveling now, but I’m ready to expand. I hope I can travel more in the future. I didn’t do it when I could have. Now, I tell people to just travel that first time you can after college. It makes you think different, rather than saying, “Oh, I’ll wait after this.” No, do what you can while you’re young.

I understand that it’s one of those things where you don’t want to mess up your timing, your flow, if you’ve got a routine. But, I was the kind of person where, if I had to go to Utah for one conference for one day, I would get so much done in that day. I’d be at the conference from eight to five, and from five to eleven, I’m doing something outside.

Some people don’t want to squeeze a trip in a couple hours. Some people can’t hang out that long. But, if you can fly away for a weekend, if you get off Thursday at four or get done with your class and you feel like you don’t have to study too hard, you can catch that 5:30 flight and come back Sunday. I feel like that’s still enough time.

Erion with his uncle, brother, mom, and sister

Is there anything else you wish you had done before your diagnosis?

I was a grandma’s boy to the fullest. If she told me to jump, I’d say, “how high?”

She told me right before she died, and this was after scleroderma got to me, “I wish I would’ve seen you walk again.” I was doing the rehab, and I was getting better. She said, “I just want to see you walk and get ready to have kids.”

She never told me that when I was in college or when she met any of my girlfriends. She did not tell me because she knew I would do it for her. If she said, “Hey, Erion, I want you to have a kid,” I would have done it that weekend just because she told me. It would have been someone I liked; it wouldn’t have been some random lady on the street.

But I wish she would’ve told me everything she wanted. She always worried that would put pressure or that I would drop everything for her. That was probably the thing that she told me that I wish either she hadn’t told me that day or she would’ve told me earlier.

She and I were talking as she was dying, and when she said that, I was like, “Now why would you do that?” That’s all life. We were having so much fun. She knew it was time to go because the cancer was too bad, and she was starting to lose it. I know she would not want me to still think about that day, but obviously you will, if that’s the last words you hear.

For scleroderma, I wish I would have known more about ligaments and tendons and how the muscles work. There’s a lot of body damage that we can control. There were some things in rehab that I learned later, or that I didn’t know at all, that could have made the condition less worse. I didn’t know how to prevent it. I didn’t know what other things I could do. Then, there are also new devices. There are newer things.

For instance, the arm. I could have been wearing braces for a long time. I have the pain tolerance for it, but I didn’t know. Even if I hadn’t gotten this disease, when you get injured, if you have a stroke, or if you break something, you have to learn how your body’s going to reheal itself.

I say that because that probably would have been maybe more important than what my grandma said, just how the physical part of the body works.

Erion shopping with his cousin

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

My best advice would be to stay physically active (even if it’s lifting your arms while seated or laying down, be as positive as possible, and advocate for yourself as a patient!

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.