Eosinophilic Fasciitis (Shulman’s Syndrome) is a disease that has been diagnosed fewer than 300 times in the past 35 years – that’s 9 cases per year in the US! Eosinophils, a type of white blood cell, permeate the muscle tissue (fascia), which becomes hard, swollen and inflexible. This can occur in the arms, legs, shoulders, hands, feet, face and trunk. Diagnosis is made with an open muscle biopsy, and treatment is typically corticosteroids and other immune-supressing medications. Blood disorders and blood cancers are common complications. With no known cause and so few documented cases, EF is challenging to treat.
I think the initials EF are especially fitting for such an effed-up disease 🙂
If you know me, you know I’ve always strived for uniqueness/out-of-the-boxness/one-of-a-kindness. Uh, yah, I was kinda focused more along the lines of creative projects – not my health.
After spending hours and hours at oncologists’ offices and the Hoag Hospital Cancer Center, I am very thankful that I have EF, and not one of the much more brutal diseases that most of my fellow patients have. It could be SO much worse!!! UPDATE: It actually has become worse, as I have developed a life-threatening complication called Severe Aplastic Anemia, which is basically bone marrow failure. My brawl just got a little more serious, but I will battle and kick AA’s sorry ass 🙂