Lori S: Mother of Eosinophilic Fasciitis Patient

My daughter, Lindsey, age fifteen, has been a diabetic since she was five years old. Since late last fall 2002, she has complained of fatigue and muscle soreness. I thought this was because she was not getting enough sleep so I brushed it off.

Early this winter she showed me her arms and legs and they felt very hard. I rushed her to the doctor who was very concerned but was told by the head of pediatric endocrinology that this was a condition common in children with uncontrolled diabetes.

As a mother, I felt compelled to get a second opinion. During my appointment with her endocrinologist I mentioned her arms and legs and he said she needs to see a rheumatologist. The first visit to the rheumatologist was extensive. She knew my daughter had some connective tissue disease but was uncertain whether it was scleroderma or scleredema.

The rheumatologist consulted a dermatologist who did a biopsy which came back inconclusive, so a second one was done. They went further into the fascia and confirmed the diagnosis of eosinophilic fasciitis (EF).

She was initially placed on cimetidine and then methotrexate. She has only been on methotrexate for a month and so far there has been no change. They are holding off the corticosteroid therapy due to the fact she is diabetic.

I would like to talk to other parents or patients with this similar disease.