It's not always about being funny.

Today’s post has nothing to do with vaginas or penises.

When Kevin asked all of his readers to post something for Cure JM Day, I agreed immediately. But then I started thinking, “What the fuck does JM stand for?” And while I guess I could read the stuff he sent me to post, I think I’ll just make something up.

Does JM stand for?

Jesus’s Moustache?
Jolly Musketeers?
Jawing Muff?
Jujubees in your Mangina?
Juicy Melons?
Jealous Margaritas?
Jews against MADD?

Okay, it’s harder thinking of J words than I thought.  It actually stands for “Juvenile Myositis” and Kevin’s daughter was diagnosed with this rare autoimmune disease on this day seven years ago.  Today also happens to be his wife’s birthday. I’ll let Kevin continue from here . . .

***

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 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 www.curejm.org.

To make a tax-deductible donation toward JM research, go to www.firstgiving.com/rhondaandkevinmckeever or www.curejm.com/team/donations.htm.

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12 Replies to “Today’s post has nothing to do with vaginas or penises.”

  1. Nenette

    I’d never heard of this. Thanks for getting the word out. As a mom who worries about every little bump and blemish on her kids’ little bodies, I’m happy that life-saving answers can be found as long as we’re all informed.

    “Jujubees in your Mangina”… very creative, I gotta say.

  2. Carolyn

    Great post with a great intro. As a mother of two, I’m glad I learned this little piece of information. They are so lucky that Dr. #4 hit the nail on the head. And that they had the resources to see 4 doctors! I can’t imagine (as I’m sure they can’t) what would have happened if things had gone differently.

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