Advocates on Steps of Congress 2013
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Scleroderma

"I'm so sorry for anyone that gets this disease."

Pixie Elia.jpgIt was in October 2012 I was diagnosed with Systemic Sclerosis by Dr. Sanz at Emory in Atlanta GA. I have never heard of this. I never thought I would be getting a death sentence! This disease is very PAINFUL I was told I might live 5 years. It was already in my esophagus and full gastrointestinal track. I was treated by a port followed by Antibodies, and cut of my Immune System with the medication CELLCEPT, but then my Husband lost his job. All treatment stopped because I no longer had insurance. Now I have gone from 118 to now 84lbs since December of 2013. I have the worst pain all over mainly in my stomach and breathing problems. It has also torn my rotator cuff in my left shoulder which the doctors will not touch because I will not heal. I'm suffering every day I wake up. I'm always throwing up, with diarrhea. I've tried to get my disability but my husband now only makes half of the pay, but since he chose to find another job which he did and he makes $197.00 more than the law says so yet again I am denied SSI benefits. I'm suffering everyday that I'm awake. I have asked my husband to donate my body to Scleroderma research. I'm so sorry for anyone that gets this disease.

 

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