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Rare disease hasn`t defeated teen`s champion spirit

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2.0 from 5 votes
Sunday, June 01, 2008

Recently, Lindsay, whose shirt read, "The sun is trying to kill me," sat down with The Edge to discuss how the disease affects her body, her education and her life.

Q: So, what exactly is junior dermatomyositis?
A: It makes my white blood cells think my tissue is infected and [the cells] attack  it. Because of this, I basically have to kill my immune system so it doesn`t kill me. It`s sort of related to lupus in a way, and it`s mainly for the elderly, but . I got it. They [the doctors]  say it is hereditary, but it`s really rare.
It`s sort of like my puberty, but instead of getting pimples when I was 13, I got a crippling disease.

Q: When were you diagnosed with this disease?
A: It was a sudden onset. I was 13, at the beach, and I just started feeling weaker and weaker. Dude, it got to the point where I couldn`t even raise my arms high enough to wash my hair. When we finally went to the hospital, my dad had to carry me in because I couldn`t walk. They told me that if I hadn`t gotten there when I did, I would be in a wheelchair now. That [the thought] is really scary. You know, I have a funny story about that. . Even at death`s door, when I could barely move, and I had to have an MRI done, they were playing music for me, you know, and they started playing, "We are the Champions." I started singing along, and everyone cracked up.

Q: Does junior  dermatomyositis still affect your body today?
A: I`m very slow to heal. I was jumping hurdles in gym last year, and I tripped, got a bruise, and I still have a little bruise there. I also miss a lot of school days, because if I start feeling bad and don`t rest, I can wake up one morning and not be able to move at all.
Mostly, my problems come from  all of the medicines I have to take. They made me go from 90 pounds to 180 pounds in, like, three weeks, and then I end up with all these stretch marks after they [the medicines]  caused my weight to plummet again.

Q: How do you keep it controlled?
A: I have to take prednisone, Neoral  and methotrexate. The prednisone causes calcium to leak out of my bones, forming these gross bumps in my skin, so I have to take Fosamax in order to counter that. I go to the doctor every other month  - until recently, I used to go every month  - and they take my blood to count my white blood cells. Depending on the count, I either have to start taking more pills, or I get to take less pills.

Q: What effect  did this disease have on your schooling and activities?
A: I`m sick so often, it`s not even funny. I didn`t even go to school for a whole semester at first. I had to be home schooled  because I couldn`t do anything by myself. I used to be really good at playing the trumpet in the band, but after I developed this [disease] , the muscles in my throat and mouth were so weak that I got really tired just playing one song. Now that I`m a little better, I`m afraid to join the [high school`s] band because I`m afraid that marching season would cause my disease to flare back up. I`m trying out for chorale now because I`ve been doing pretty well in Women`s Chorale, but I don`t think I`ll make it because I miss so many days . (Lindsay later made it onto the chorale.)

Q: Has your disease affected the way you  live your life?
A: I must say, I`ve lacked a boyfriend for two years, but I`m blessed with so many friends. Also, I can`t really go outside and do stuff like other kids; I have to worry about getting tired in the sun. A lot of times, I guess, I don`t try to do a lot, so then I don`t really know what my limitations are. So then, I won`t go crazy knowing that I can`t run a lap like all my other friends can.

Q: Are you going to be able to live on your own, eventually?
A: I try not to think about it. Right now, I have to have all kinds of help. Someone has to help me open Coke bottles because my fingers are too weak. They estimate that by the time I`m 21, it`ll [the disease will] either go into remission or completely go away, but there is, like, a 75 percent chance that it`ll come back.

Copyright © 2007 The Roanoke Times

 

Author: By Patrick Mahaney
Source: The Roanoke Times
2.0
2.0 from 5 votes
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