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.
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.
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.
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.
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.
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.
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
