Advocates on Steps of Congress 2013
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My Voice: Ellie Brawdy

Hi, my name is Ellie Brawdy and I'm 16. I'm a junior in high school. I love swimming (breaststroke is my favorite) and reading (my favorite book is "Nineteen Minutes" by Jodi Picoult). I like to go camping with my family and I'm active in my church youth group.

Ellie BrawdyMy first symptom of scleroderma was on my right elbow. I remember being in the kitchen. I was 10 years old. I had bumps on my elbow that came out of nowhere. They looked like scars of some sort, so we went to the doctor. The doctors thought they were cysts and ordered a biopsy. They found out it was calcinosis but they didn’t know why it was there.

About three months later, the bumps came back. I had another surgery and my doctor put me on some medication that made it go away. But after awhile, I started having really bad acid reflux. So, they took me off the medicine and the bumps came back.

I was diagnosed with scleroderma in December 2006, when I was 12. At first, my doctors thought I had lupus. It was after they ran some tests, they found I have limited systemic scleroderma. I also have primary Raynaud’s.

When I was younger, I didn’t want to hear that I had this disease that would be with me for the rest of my life. Later, I realized that I have to live with this forever and I need to be more proactive. My mom listened and told me what to do to take care of myself.

My mom is always there for me. Whenever I need to talk about something, she is willing to explain things to me and help me get through it. Whenever I don’t feel well, she can tell. If I call home from school because I don’t feel well, she knows. She lets me go home and sleep. We have this thing where she’ll ask, “Do you need your love cup filled?” It’s her little way of asking if I need something.

My advice for kids with scleroderma is to try sports. As much as they wear you out, they make you feel awesome. I’m tired and worn out after I’m done with swimming but I feel great that I can still do this. I might not be able to do this in five years or even two years. But it helps. Swimming has increased my lung capacity a lot.

One day, I would love to have a cooking business like a bakery with my mom. We love to cook. It would be her and me. I really like baking. It’s fun and I’m artistic. I like to put my best effort into things.

I’ve had two surgeries, and I have another surgery scheduled in April. I had a bad infection on my elbow after I had mono last fall that left a mass of calcium on my elbow which hurts when I hit it. We’ll go in and take it off. There’s no guarantee that it won’t come back but it’s something I want to try.

I’ve really turned around. I’m more optimistic now. It really helps. Whenever you’re mad or resentful about something, it doesn’t help you at all. I find talking about how I’m feeling on bad days makes me feel better. When I talk to my mom and pray, I always think that I’m blessed that it isn’t worse. It could be so much worse.

This story originally appeared in the Spring 2011 issue of "Scleroderma Voice" magazine.

 

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