I was first diagnosed with scleroderma in 2010 after eight months seeking answers to my growing list of health problems. In 2012 the diagnosis of interstitial lung disease was added, and my case was labeled aggressive with poor prognosis. Breathing, and the fatigue and pain when I didn’t have enough breath, were my biggest challenges. That is when I truly believed I was in an emergency medical situation, and I had to take more decisive action. I did, and today my complaints are relatively minor.
After taking part in a clinical trial for stem cell transplants at Northwestern in Chicago, I created the Facebook community I call Scleroderma Stem Cell Pioneers. I am so proud that this community is thriving six years later, with 2,500 members educating and supporting each other with the good and the bad, in a kind, honest, semi-private space. We have helped hundreds of people around the world weigh this option and find their way to this life-changing treatment opportunity for aggressive scleroderma.