In April 2009, My younger sister, at the age of 21 years, was diagnosed with a very rare autoimmune disease called scleroderma. According to the Scleroderma Foundation, the disease affects about 250 per million (.025%) US adults. There are different sub-types in this disease and based on the progression so far, it appears that Hannah has the most serious- systemic diffuse scleroderma. Although the course of this disease varies from individual to individual, it can be very serious. For example, fibrosis or scarring in the lung and heart are just a few of the potential complications with those that have diffuse scleroderma.
In terms of the current symptoms, the blood vessels in Hannah's fingers and toes have thinned. This has caused my sister's extremities to get painfully cold in temperatures below 70 F. She often carries mittens. Another symptom Hannah has developed since her diagnosis is joint pain.
Because of the disease's rarity, there is relatively little medicine being researched for those plagued with this disease. People with scleroderma often have to treat symptoms as they appear and hope that it does not get too bad in the first 5 years when the disease is most aggressive.
Hannah is a truly a beautiful person. It breaks my heart that my only little sister does not get to freely enjoy her youth. Not only that, but I sometimes wonder where she will be in 10 years. I hate thinking about her being handicapped or worse, not being around. The only thing I know can do is to be supportive of her. I go to as many of her doctor appointments as I can and I help her track the progression of the disease. And I listen. But still, I feel so helpless.
I wish there was something more I could do. I was hoping that I could help her find funding for her medical bills, college. Hannah has over a 3.8 GPA at the University of Massachusetts- Amherst. She is a very hard worker that was even concert mistress in her high school orchestra (although she can barely play violin now because her fingers are stiff). I tried looking for scholarships for scleroderma/rare diseases and was unable to find one. Besides being a hard worker, Hannah, is an amazing person in my family. She is often the first person to jump in when someone in the family needs help. She rarely asks for help for herself, and it is this fact that makes it harder for me to watch her weaken in her physical and emotional health.
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Hi, my name is Heather! Please email me when you can, I have a question about your blog!
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As a sign of gratitude for how my husband was saved from Lymes, I decided to reach out to those still suffering from this.
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