Advocates on Steps of Congress 2013
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Tough Skin

Tough Skn
Tough Skn

Wilbert's fight with Scleroderma

My husband lost his fight with scleroderma on October 2, 2006. He was my hero and always will be.

Wilbert was diagnosed in the summer of 2001 with systemic scleroderma. Initially he would exhibit signs of Raynaud's. Cold and stiffness in hands was something he adjusted to quickly as a Landscape Designer, something he truly enjoyed. However, eventually he suffered from pseudo-obstruction, and bacteria over growth. After doctors inserted a line for feeding and a g-tube with suction pump attached, he managed pretty well. Food had become his enemy. Now only 140 pounds, this 6'3" man once weighed 195-210 pounds. Meka, our daughter and I would infuse him each night with TPN. It was hard to observe him watch the process - he knew this supplement was the only thing keeping him nourished, but he continued to feed on spiritual food to keep him grounded. Keep him whole. He was such a fighter, had such tough skin and never did he blame almighty God for his decline.
I loved this man and I loved what he stood for. I will always remember the smile on his face as he took his last breath. I know he was saying, "It was a good fight!"

 

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