In late 1996, when I lived in Florida, I noticed overall swelling one day while I was driving to the golf course. The swelling persisted, so I saw an internist, who prescribed diuretics. After two months of persistent swelling, my regular doctor sent me to a dermatologist who finally diagnosed me with eosinophilic fasciitis (Shulman's Syndrome) and treated me with steroids. The medication was not any help, even though I had all of the side effects.
Then he tried PUVA phototherapy with high doses of steroids. The swelling went away, but my skin became hard on parts of my legs, arms, and shoulders.
I still am addicted to sleeping pills necessary to counteract the stimulating effects of the steroids. I came to the conclusion that the dermatologist was too reliant on steroids, so I went to a rheumatologist. He told me that I have a scleroderma-like condition. He tried every drug or intravenous treatment that could possibly help me, including chemotherapy, but to no avail.
I was part of a scleroderma clinical trial at the University of Connecticut Health Center with Dr. Naomi Rothfield and her fine staff, but it did not help. Next, I may join the new experiment in animal bovine collagen. I also went to Dr. Joseph Korn in Boston for his opinion. He thinks that I have eosinophilic fasciitis.
My current physical condition involves knee contractures that prevent me from walking, very tight skin in the leg area, and mild arm and hand tightness. I can type and wheel myself around in my wheelchair. I do not have any facial involvement. Fatigue is the most difficult symptom, along with addiction to sleeping pills. I can only work for a couple of hours. Obviously, I cannot golf anymore, and restricted activity is the order of the day.
The doctors tried what is called 'progressive casting' of my legs. During the second week of immobility, I developed a serious sore on my leg. The casts were taken off, and my legs are still not back in condition for casting again. I am told that knee contractures are relatively rare in scleroderma.
I seem to have the reverse of normal conditions; that is, more leg involvement and less skin tightness in the face and hands. I have no skin tightening in my fingers, except that they are very cold.
That is my story. I may need a new doctor, only because Boston is too far away for me. Perhaps there is a treatment center in Manhattan? Fortunately, I have a driver, plus a wheelchair in the trunk of the car.
New Email: [email protected]
Old: [email protected]
Story posted 11-24-00
Story edited VH1: JTD 9-9-03
New email posted 7-2-04 SLE
Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
Bovine Collagen Study
Eosinophilic Fasciitis (Shulman's Syndrome)
Voices of Scleroderma Volume 1
We have the world's best supporters! See ISN News.
SCLERO.ORG is the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses. We are a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team. Donations may also be mailed to: