- CASE FILE
Diagnosed with scleroderma in '06. Symptoms: fatigue, muscle pain/weakness, shortness of breath, GERD, Raynauds, sclerodactly
ABOUT THIS CASE FILE
Scleroderma is a rare autoimmune disease in which the body over produces collagen, causing thickening and stiffening of connective tissues. There are different types of scleroderma. I have diffuse, systemic scleroderma, more recently referred to as systemic sclerosis, which affects internal organs and body systems such as the entire GI tract, lungs, heart, kidneys, skin and vascular system. Pulmonary Arterial Hypertension is the leading cause of death in patients with scleroderma. Scleroderma affects women more than men. There are approximately 300,000 people in the world with scleroderma. 100,000 in the US. There is no cure. Scleroderma can also overlap with lupus and fibromyalgia. I also have fibromyalgia.
I started having autoimmune symptoms after my first son was born. 8 years and 3 doctors later I was finally diagnosed. I was immediately put on Cellcept, an immunosuppressant, prednisone and omeprazole. I currently take 8 different medications daily.
Along with scleroderma I also have fibromyalgia, anxiety and depression. I had to quit working in 2010 and have been raising 2 boys on my own, with no child support, on $700/mo SSI, $300/mo TANF and food stamps.
Aside from the physical symptoms and daily pain, the grieving for who I used to be and what I used to be able to do is ongoing. Chronic pain/illness is isolating and lonely. I also feel guilt for not being able to give my boys what they deserve - a healthy, happy mom, not to mention the fact that they often have to care for me.
Depression is par for the course with this illness, and one of my hardest battles, maybe even more so than the daily pain and immobility. However, I count my blessings every day and know that things could be worse. I have a good support system in wonderful friends.
In 2007 I found the International Scleroderma Network and soon was asked to be a Support Specialist and later a Blogger. That has helped me tremendously in coping with this disease.