Advocates on Steps of Congress 2013
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My sister has scleroderma

My sister was finally diagnosed with scleroderma after month of visiting different doctors and many test; now her life has changed forever.

My sister is living every day with new symptoms and trying to cope the best she can. Her feet and legs up past her knees and hands and arms up past her elbows are very hard and have changed in color. She has extreme burning most of the night that keeps her awake.

She has a lot of itching but there does not seem to be anything that helps her. She is getting weaker but fights each day and thanks God for every moment that she is able to push on. I do not know how she does it sometimes and my heart breaks to see her in this condition. She had just made it through stage 4 rectal cancer and was well into her fourth year of remission when scleroderma hit her very hard.

She was having physical therapy and it was helping but Medicare seems to feel she does not need it anymore and will not cover it.

I pray everyday for her and all of you out there that have this disorder; my prayer it that a cure will be found soon, but until then I want treatments and medications that will help my sister and everyone to have a better quality of the life for you all. So far we have not had any help for my sister that has worked. The doctors do no call you back and she feels like there is nowhere to turn. I pray someone somewhere will come into her life that will be able to help this stiffness, burning, itching and pain ease so she can have some quality of life.

 

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