Advocates on Steps of Congress 2013
Please leave this field empty

The Face of Systemic Scleroderma

"Scleroderma never crushed my spirit, it had to learn how to live with me!!!!!"

carol forte.jpgWith the advice from a co-worker in 2007 who notice my hands swollen and advised me that I may be working too hard, I decided to try to find out what was going on. I was a Instructional Assistant full time and a Hallmark merchandiser for a second job. I had two children still going through college and I was a single parent, so working two jobs was necessary. I sought advice from my hand surgeon who repaired years ago 2 carpal tunnels and 5 trigger fingers and he was baffled. Then my ankles swelled and as the symptoms increased. It took 7 doctors to finally diagnose me with Systemic Scleroderma. My blood test were all negative, and I was diagnosed from a wait and watch (as they called it a clinical observation) as my skin hardened. I had a second opinion done at the Mayo Clinic Scleroderma Center in Scottsdale, Arizona. The news was devastating and I was being sent back to the east coast on Cellcept, and had to searched for a Scleroderma Center here. I went from Jefferson Hospital in PA, to John Hopkins, Scleroderma Center in Baltimore. After 5 years under the care of a fantastic doctor, Dr. Franceso Boin, I am happy and feel very blessed to say that I'm in remission. This picture was taken at the height of the pain, fatigue, and of course hard skin.Lots of pain meds, cellcept, acid reflux meds, along with reynauds meds. Scleroderma never crushed my spirit, it had to learn how to live with me!!!!!

Thanks for taking the time to read my story.

 

All active news articles