Friday, October 02, 2009

Cure JM Awareness Day

Some days I'm amazed by what we can accomplish when we come together as a blogosphere, to build something bigger than our brands or egos. I hope today is one of those days...

Kevin of Always Home and Uncool
has asked me to post this as part of his effort to raise awareness in the blogosphere of juvenile myositis, a rare autoimmune disease his daughter was diagnosed with on this day seven years ago. The day also happens to be his wife's birthday.

Here is Kevin's Story:
Written by Kevin of Always Home and Uncool

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, part 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 scars, six to be exact, 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.

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


Thanks to all those participating in Cure JM Awareness Day today:
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  1. Jesus Christ, I'm crying.

    My daughter was diagnosed with Lupus at the age of 10. Our ordeal was not as traumatic as that, but scary and angst-ridden none-the-less.

    Thanks, Amy, for posting this.

  2. Amy - You went above and beyond. Thanks for your help today.


  3. Thats is terrible for a child to have. I'll pray for her.


  4. You know you need to go to sleep when:

    I read your partial feed and thought--wow Amy and I think so much a like, we wrote almost the exact same opening two sentences to this post.

    Until I realized

    It is the exact same opening two sentences.

    Turning off the computer now. (laughing, shaking head)

  5. Great post from you and Kevin, hits very close to home for me personally. Excellent getting information out there for parents to keep seeking the right doctor till you get the answers!


Thoughts appreciated. Advice welcome. Douche-baggery scoffed at then deleted.