What the F is EF?

Eosinophilic Fasciitis (Shulman’s Syndrome) is a disease that has been diagnosed fewer than 300 times in the past 35 years – that’s 9 cases per year in the US!  Eosinophils, a type of white blood cell, permeate the muscle tissue (fascia), which  becomes hard, swollen and inflexible.  This can occur in the arms, legs, shoulders, hands, feet, face and trunk.  Diagnosis is made with an open muscle biopsy, and treatment is typically corticosteroids and other immune-supressing medications.  Blood disorders and blood cancers are common complications.  With no known cause and so few documented cases, EF is challenging to treat.

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I think the initials EF are especially fitting for such an effed-up disease 🙂

If you know me, you know I’ve always strived for uniqueness/out-of-the-boxness/one-of-a-kindness.  Uh, yah, I was kinda focused more along the lines of creative projects – not my health.

After spending hours and hours at oncologists’ offices and the Hoag Hospital Cancer Center, I am very thankful that I have EF, and not one of the much more brutal diseases that most of my fellow patients have.  It could be SO much worse!!!  UPDATE:  It actually has become worse, as I have developed a life-threatening complication called Severe Aplastic Anemia, which is basically bone marrow failure.  My brawl just got a little more serious, but I will battle and kick AA’s sorry ass 🙂

3 thoughts on “What the F is EF?

  1. Is that kinda like ENFU having EF?? BTW… I know where this picture was taken and I was there with you. Can’t believe that’s been two years ago…where has time gone. Love the nails, yes creative, different and so you! That’s why we love YOU!

  2. Hi!
    I too am afflicted by the syndrome. I live in Ontario Canada. I was diagnosed in January 2011 and have had some success with Prednisone. I was told this rare syndrome is present in about 1 in 200,000 person.

    When were you diagnosed and have you had some flare ups? I am presently having mild flare ups in a left arm and the doc wants me to wait to go back on Prednisone again.

  3. Hi Rachel – Sorry to hear that you are having flare ups. I have a love/hate relationship with Prednisone. It works when you need it, but the side effects are tough to deal with, right? I hope you can get on a low dose and it clears up your EF soon, so you can get off it asap 🙂 I was diagnosed in the summer of 2012, and I was given Prednisone and Cyclosporin to clear it up. I couldn’t really bend my arms or legs, open my mouth very wide, raise my arms or sit down without pain. My EF was completely cured with these meds, but it went into Severe Aplastic Anemia, which required a bone marrow transplant. I am now in remission 🙂 Thanks for reading my blog, Rachel, and I wish you all the best in your battle with EF!

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