Friday, October 2, 2009

To Cure Juvenile Myositis, You Must First Know It Exists

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Our pediatrician admitted it early on.

The rash on our 2-year-old daughter's cheeks, joints and legs was something he'd never seen before.

The next doctor wouldn't admit to not knowing.

He rattled off the names of several skins conditions -- none of them seemingly worth his time or bedside manner -- then quickly prescribed antibiotics and showed us the door.

The third doctor admitted she didn't know much.

The biopsy of the chunk of skin she had removed from our daughter's knee showed signs of an "allergic reaction" even though we had ruled out every allergy source -- obvious and otherwise -- that we could.

The fourth doctor had barely closed the door behind her when, looking at the limp blonde cherub in my lap, she admitted she had seen this before. At least one too many times before.

She brought in a gaggle of med students. She pointed out each of the physical symptoms in our daughter:

The rash across her face and temples resembling the silhouette of a butterfly.

The purple-brown spots and smears, called heliotrope, on her eyelids.

The reddish alligator-like skin, known as Gottron papules, covering the knuckles of her hands.

The onset of crippling muscle weakness in her legs and upper body.

She then had an assistant bring in a handful of pages photocopied from an old medical textbook. She handed them to my wife, whose birthday it happened to be that day.

This was her gift -- a diagnosis for her little girl.

That was seven years ago -- Oct. 2, 2002 -- the day our daughter was found to have juvenile dermatomyositis, one of a family of rare autoimmune diseases that can have debilitating and even fatal consequences when not treated quickly and effectively.

Our daughter's first year with the disease consisted of surgical procedures, intravenous infusions, staph infections, pulmonary treatments and worry. Her muscles were too weak for her to walk or swallow solid food for several months. When not in the hospital, she sat on our living room couch, propped up by pillows so she wouldn't tip over, as medicine or nourishment dripped from a bag into her body.

Our daughter, Thing 1 -- Megan, now age 9 -- remembers little of that today when she dances or sings or plays soccer. All that remain with her are the scars from the operations and the vasculitic ulcers, and the array of pills she takes twice a day to help keep the disease at bay.

What would have happened if it took us more than two months and four doctors before we lucked into someone who could piece all the symptoms together? I don't know.

I do know that the fourth doctor, the one who brought in others to see our daughter's condition so they could easily recognize it if they ever had the misfortune to be presented with it again, was a step toward making sure other parents also never have to find out.

That, too, is my purpose today.

It is also my birthday gift to my wife, My Love, Rhonda, for all you have done these past seven years to make others aware of juvenile myositis diseases and help find a cure for them once and for all.

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To read more about children and families affected by juvenile myositis diseases, visit Cure JM Foundation at

To make a tax-deductible donation toward JM research, go to or


  1. Thanks Kevin for participating in Blog4Rare. Hope to chat in the next week or so!

  2. My son has Mastocytosis. Not the same, but also a rare 'orphan' disease (i.e. no one can tell us the cause) that impacts the autoimmune system and minfests iteslf on the skin. He's 'lucky'...his case is very mild and the interruptions to his daily life minimal. But it's frustrating how little doctors know and how little can be done. Sending love to your little girl, and voting for your Pepsi Refresh idea.

    PS: If so inclined you can read about my son's disease on my blog:

  3. My son has been complaining of pain in his back and legs. He has difficulties of keeping up with the other kids, and finds excuses to get the others to play something less physical, such as video games or play with his little hot wheels cars. I have lupus, and the rash I have on my face begins on my cheeks and moves up the bridge of my nose and settles above my eyebrows. Although his doesn't have the purplish tent, it does have the same pattern along with the small white bumps. His knees are often swollen and tender. his hands are constantly in a fist, and he can't make them move correctly to even tie his shoes. He has pain in his jaw and neck that makes it difficult to chew and swallow food. However, he doesn't have the rash on his knuckles, nor other symptoms I have read about. He has 8 different doctors peds, ortho, cardio, allergist, ect. They all agree on three things. (1) something is going on and (2) they don't know what it is (3) It maybe Juvenile Myositis. We are waiting to get an appointment with a rheumatologist right now. I would like some more information. please e-mail me


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