Advocates on Steps of Congress 2013
Please leave this field empty

Second Annual Sclerodoodle Contest Winner: Erin Thomas

Earlier this year, we held our Second Annual Sclerodoodle Contest as part of June's Scleroderma Awareness Month activities. This year's grand prize winner was 23-year-old Erin Thomas of Albuquerque, N.M.

erin-thomas-photo.jpgErin was diagnosed when she was 11 with diffuse systemic scleroderma. She also has Raynaud Phenomenon and Sjogren Syndrome. At 16, she was diagnosed with Type 1 Diabetes, her doctors theorize that the disease may have been caused by scleroderma affecting her pancreas.

As part of Erin’s award, she won a trip to attend this year’s conference in Atlanta. We had the chance recently to chat with the University of New Mexico college student about what it was like growing up with scleroderma, how the disease has affected her and her outlook on life.

Voice: Describe for me what it was like when you were first diagnosed with scleroderma?

ET: Living in New Mexico, nobody knew what scleroderma was. There were no pediatricians or  pediatric rheumatologists here. I was lucky to receive a diagnosis quickly because I was a competitive softball pitcher. My team traveled a lot, and when we went to a tournament in Colorado, I developed a sore on my finger. I thought it was some sort of fungus. My mom took me to a dermatologist who knew what Raynaud’s was and he ran tests for scleroderma that confirmed what I had.

A little later, my parents went to the [Scleroderma Foundation’s] conference in Washington, D.C. to learn more about how to care for me. They met a doctor who recommended Children’s Hospital of Los Angeles. I also saw a doctor at Children’s [Hospital] of Denver. He told my parents that I had three years to live because I had the systemic form of the disease. However, the doctor in LA was much better with providing information about the disease. He said that I could live a long time if we treat it right.

sclerodoodle display.jpg sclerodoodle shirts 1.jpg
sclerodoodle shirts 2.jpg

Erin’s artwork was on display at the conference. Also, for the first time, the Foundation created commemorative t-shirts for all conference attendees, which featured Erin’s sclerodoodle on the front and a list of the past conference city locations.

Voice: What is the biggest lesson you’ve learned from having scleroderma?

ET: Don’t expect so much out of yourself. I was an overachiever growing up. I needed to get straight A’s in school. B’s were very upsetting. When I was in high school, I learned I couldn’t be that [overachieving] student and take care of my health, especially after I was diagnosed with Diabetes. I couldn’t be that 100 percent straight-A student anymore.

I can’t expect to be able to go a whole week without being tired, so I’m careful not to over-plan activities. I can’t expect so much of myself because I don’t have the stamina. You never know if you’re going to wake up in the morning and have energy or not. You  need to pay attention to what the disease can do and not be arrogant about it.

Voice: In one word, how would you describe scleroderma?

ET: Altering

Voice: What does art or drawing mean to you and how has scleroderma changed that?

ET: I’ve always been a creative person. I used to do paper arts, like pop-ups and full scenes constructed out of paper. I didn’t use pens or pencils. But, as my skin became tighter, it was harder to make cuts with scissors.

I switched to sketching so that I could still have that creative outlet and keep art in my life. As I have progressed with the disease, I work on a piece and come back to it. My older sister is also an artist. She has her sketch pad, and she can sit there all day and create a masterpiece. I have to sketch a little bit, then my hand cramps or spasms if I force myself to keep going. It can ruin the page.

Sometimes, I just dread coloring a piece. I don’t know if I’ll be able to hold my hand steady so that I can keep it even on the paper.

Scleroderma hasn’t taken art away from me which is awesome because I need that creative outlet. You just need to alter how you do things and adjust so you can do what you can.

Voice: What recommendations do you have for someone who is newly diagnosed with scleroderma?

ET: Take it one day at a time. Don’t worry and get caught up with achieving this and that. You never know what’s going to happen tomorrow even if you don’t have scleroderma. Take it one day at a time and enjoy it as much as you can.

 

All active news articles