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Kathleen S: Eosinophilic Fasciitis

I noticed that winter during gym, that when we did push-ups, I had to do knuckle push-ups because I could not straighten my fingers.

Pink Daisies by Ione Bridgman, ISN ArtistI had always been very athletic and active as a child. I rode horses and competed on the national show jumping circuit since I was five. I played basketball and ran track as well. When I was a freshman in high school, I began feeling very tired all the time. And for the first time in my life, I really had a difficult time playing basketball. I always wanted to sit down and rest. Also, I noticed that winter during gym, that when we did push-ups, I had to do knuckle push-ups because I could not straighten my fingers.

Anyway, that school year finished, and I took off for a summer of jumping competitions. Soon, I began going to bed at four in the afternoon, and could not stand when I would dismount from my horse. A few weeks later, I was unable to walk down stairs, because my hips, knees, and ankles just could not move that way. But, I continued riding and finally came home at the end of August. That was the first time that I had worn shorts all summer, and I could not believe how huge my ankles were! My sister had been teasing me all summer about how big my hands were, but I had told her that they were always that way or so it seemed to me.

Finally I went to some local doctors, but they had some problems figuring out what was going on. My eosinophil rate was over fifty-five percent. Some of them told me to just take some Benadryl.

Luckily my dad has a cousin who is a pediatric orthopedic surgeon at New York Hospital for Special Surgery (HSS). He set me up with Dr. Lehman, the chief of Pediatric Rheumatology at HSS, the very next day.

Dr. Lehman looked at my rashes, and my blood work, and put me on very high doses of prednisone. We immediately saw a change in my blood work, so we continued along with the prednisone, and some anti-inflammatories. I also began physical therapy.

That was eleven years ago. Luckily, Dr. Lehman still sees me; we have had different medications, and some different problems over the years, but I consider myself to be doing well. I was able to continue riding until I finished college, and I still ride occasionally for fun. Currently, I take prednisone, plaquenil, and relafen.

I have different problems now that I am an adult, and am trying to hold a regular job, but I am learning how to manage my health in this setting. The biggest difficulty is learning to keep a balance. I have problems if I let myself become too idle; I have to keep up with moderate exercise, such as walking. I walked a marathon for the Arthritis Foundation in 2001, but I had some problems after that.

I was married in 2002, and my husband is very supportive. His mom has lupus, so he is familiar with chronic illness.

I have found it difficult to communicate with people how I am feeling. I look like a healthy, active young adult; but a lot of times, I feel exhausted, and in pain. It is hard to go to college and explain that to people who just have no idea what it feels like. Likewise, it is difficult to explain it to adults who do not know what it feels like.

I am grateful to have such a supportive family, and a great doctor. They have helped me to go after my goals and to keep a positive attitude.

To Contact the Author

Kathleen S.
Email: [email protected]
Story posted 06-07-04 SLE

Story Artist: Ione Bridgman
Story Editor: Judith Devlin
LINKS
Dr. Lehman
Eosinophilic Fasciitis
Lupus

ISN Artist: Ione Bridgman

Ione BridgmanISN Artist Ione Bridgman created original artwork to illustrate this page. She is 90 years old, and lives in New Zealand. Her lovely paintings illustrate many of our pages and the covers of our Voices of Scleroderma Book Series .

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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