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Jon T: Eosinophilic Fasciitis

I am stumped as to the possibility for me to return to normal duties at work, and what the normal prognosis for someone with this disease can expect?

Agapanthus by Sherrill Knaggs, ISN Artist Hi, my name is Jon, and I was recently diagnosed with Eosinophilic Fasciitis. I am a thirty-eight-year-old fireman, and I am married, without children.

This whole thing started months ago, when I denied the fact that there was something wrong with me, after noticing that my legs were really swollen, and discolored. I had just had a surgery on my shoulder following a Brazilian Jiu Jitsu injury, and noticed my arms were becoming more and more swollen as well.

Near the end of my recovery of the shoulder surgery, I began to have problems making a fist in both hands. My wife convinced me to see my doctor about it. After six weeks of nearly every test I had heard of, and being seen by four doctors, I had a biopsy of my calf, and got started on prednisone 80mg/day, that afternoon.

The rheumatologist confirmed the diagnosis to me over the phone the night of the biopsy. I have since been on the prednisone for the past week, and have not noticed any change as of yet. I also do not have the appetite I used to have which is good for me, as I am a bigger fellow.

I guess the reason I wanted to post my story is that I understand that this is a rare disease, and after using the internet to research the disease, I am stumped as to the possibility for me to return to normal duties at work, and what the normal prognosis for someone with this disease can expect?

I am looking for information, any and all that can help me understand how and what I need to do to get better. Sorry for all the "I" 's in this post, don't mean to sound self centered. Let me know if you can help, or if I can help you in anyway.

~Update 11-26-07~

Well, sadly I am not any better, in fact I am worse. The disease has spread throughout my entire body, making getting out of a chair, bed, or doing just about anything, very difficult. Add to that, the fatigue, and sometimes not being able to put in a full eight hours at work, and you have a truly life altering situation.

Unfortunately, my job is now at stake, and I am most likely going to lose it, as I am unable to perform my firefighting duties with this disease and I don't qualify for disability, so I guess I will slip thru the cracks.

The prednisone hasn't worked at all, and I have decreased that to 30mg/day, but I have increased the dose of Methotrexate to 25mg, injected once weekly into my fat. No change with this drug either, and it's been a total of two and a half months on this medication.

I am not sure what I am going to do, but I know one thing, my patience is wearing thin, and I am feeling down more often than I ever have in my life. I don't feel sorry for myself, just mad that I can't do any of the things that I enjoyed in life, prior to this diagnosis. Well, that's all, praying for a miracle.

To Contact the Author

Jon T.
New email address needed 08-06-09 SLE
Old Email Prefix: dela
Story edited 08-21-07 JTD
Story posted 08-21-07 SLE
Story update edited 11-26-07 JTD
Story update posted 01-14-08 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin
Eosinophilic Fasciitis
Eosinophilic Fasciitis Stories
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Diseases Similar to Scleroderma

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

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!

Go to Jonty: Son of Scleroderma Patient

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