My name is Ann and I was diagnosed with Systemic Scleroderma in June 2009. Systemic scleroderma is an autoimmune disorder that affects the skin and internal organs. Autoimmune disorders occur when the immune system malfunctions and attacks the body’s own tissues and organs. The word “scleroderma” means hard skin in Greek, and the condition is characterized by the buildup of scar tissue (fibrosis) in the skin and other organs. The condition is also called systemic sclerosis because the fibrosis can affect organs other than the skin. Fibrosis is due to the excess production of a tough protein called collagen, which normally strengthens and supports connective tissues throughout the body.
My systemic scleroderma diagnosis came after many doctor’s were complete clueless as to what was afflicting me. I was told I was “depressed.” I’m a mother of three and at the time this happened I was a sole owner of a pizza shop and my favorite fly fishing, bait and tackle store.
Systemic Scleroderma has literally robbed me of my life. I’m in so much pain all of the time and I’m incredibly scared because there is not enough information on Scleroderma. When going to the E.R., some of the doctors don’t even want to see me.
My wish is that friends and family will spread the word and create awareness for this rare disease. I hope for more funding so there is a chance for a cure someday. And last I pray for Scleroderma patients to receive more compassion.
For more information, visit the Scleroderma Foundation.