Advocates on Steps of Congress 2013
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I've Lived with Scleroderma for 20 Years

"I feel very fortunate to have made it this far!"

Valerie Pullen.jpg

I am a volunteer at a local wildlife refuge.  Yes, I am holding a pine snake in the photo.  It's a threatened species in NJ.

I was diagnosed with systemic diffuse scleroderma in 1993.  I started showing signs in late 1992.  The disease attacked me aggressively with almost total skin invovement and gastro damage top to bottom.  After 7 years, I went into a spontaneous remission and my skin softened.  I had a few good years with just the gastro involvement and meds to control other symptoms.  Then, the disease reactivated in 2010, this time involving my skin again and lungs.  I have mild PAH and pulmonary sclerosis.  Between Tracleer and Cellcept, the disease has leveled off again.  My pulmonary issues are mild thanks to those two important meds.  I am on a myriad of drugs which all keep me going. I'm retired and I'm back to volunteering and handling raptors and other wildlife.  I feel very fortunate to have made it this far!

Dr. Nora Sandorfi is my scleroderma doctor.  In the past I saw Dr. Sergio Jimenez. I live within half an hour of the Jefferson and Penn in Philadelphia.  I'll be 68 years old in Sept and have lived with scleroderma for 20 years.

 

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