Cure JM

posted by Momo Fali on October 2, 2009

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.

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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 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.com.

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

    Comments

  • ♥georgie♥


    wow just wow…so glad the JM is under control now and to be honest had it not been for this post i would not have known about this, off to read more

  • Always Home and Uncool


    Thanks for getting out of your sick bed to help me out, Momo. Get well. We need you.

    Cheers —

  • AlisonH


    The autoimmune diseases get so little of the pie of medical funding–although HIV research has spilled over as they learn more about the immune system. I'm so glad she got diagnosed and treated!

    Bone marrow transplants for lupus and others are in the early stages of study, on the theory of an errant B-cell being replicated endlessly: toss'em out, start over. The early results are encouraging. (I was too healthy and too old for the lupus study; 40 was the cut-off.)

    Thank goodness for that doctor who not only diagnosed your friend's daughter's disease, but taught others to too!

  • meleah rebeccah


    Ive never even heard of juvenile dermatomyositis. Thanks for spreading awareness. And this was a very touching post.

  • surprised mom


    Thank you for this post. I've never heard of juvenile dermatomyositis before reading this. I now work in a dermatologist's office. I'm thinking of asking the doctors what they know about this disease.
    This post was also very touching. I'm glad your daughter doesn't remember what she went through and that the disease is being held at bay. Your daughter's diagnosis was a special gift for your wife that day. I'm sure your daughter's continued health is a gift she, and you, cherish.

  • MommyTime


    It's great of you to put up this post.

    I hope you are feeling much better. I have tried to do everything right too (and also have asthma), so your experience scares me. Pneumonia is so painful, I understand. I am sending all the good thoughts I have for a speedy recovery.

  • Tracey


    A terrific post that bares repeating! Thanks for getting the word out to all of us who are uninformed!

  • Bean


    Awesome post for a friend in need.

  • Maureen


    I too have never heard of this before. Take care, I do hope you are feeling better.

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