About three months after my bypass surgery, I noticed a tightness of my skin, as well as redness and inflammation. I went to see a dermatologist who did a deep biopsy. I was told that I did have eosinophilic fasciitis (EF). I was given prednisone which relieved the redness and heat from my skin but the tightness is still there. No one knows where this comes from and all they tell me is that it is a rare disease.
I have been off the prednisone for a month and a half, and the doctors now want me to start a new medication, methotrexate, to see if this will help my condition. It is very hard for me to walk and very painful when I do.
I have looked for support groups that deal with my disease, but could not find any so I contacted the International Scleroderma Network (ISN), which has stories of others who suffer from this.
My hands have become very weak and with all my other medical problems, this one really depresses me the most. I have tried to contact other veterans who may be suffering from this, and also those who served in Vietnam and were exposed to Agent Orange. I do not know if that has anything to do with this disease, but it seems that no one knows where it comes from and how a person gets this disease.
If anyone is interested in starting a support group for Eosinophilic Fasciitis, I would be willing to assist.
Email: [email protected]
Story posted 04-11-04 SS
Story Artist: Ione Bridgman
Story Editor: Judith Devlin
ISN 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.
TOLL FREE HOTLINE, U.S. and Canada: 1-800-564-7099
Ask for our Free Info Packet by email or postal mail!
SCLERO.ORG is the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses.
We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to: