Citizen of the Month

the writing and photography of Neil Kramer

Help Cure Juvenile Myositis

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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.org.

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

7 Comments

  1. Thanks, Neil. You’re a mensch.

  2. Great of you to spread the word. I’m so glad that they found several second opinions! And that his little girl continues to thrive.

  3. I’ve never heard of this disease. What a heart-wrenching and painful experience you all endured seeking a diagnosis, followed by a year of grueling treatment. I’m glad Megan is doing well today. Thank you for the education. Happy Birthday to Rhonda.

  4. Yikes, never heard of it but am glad to know about it, thanks for spreading the word. Best wishes to that family.

  5. I am so glad her story had a happy ending; I had never heard of this condition before. Hopefully by spreading the word it will help other children be diagnosed early enough to be helped.

    I hope Megan continues to thrive.

  6. Thank you for bringing this to our attention. I’m so thankful that this was diagnosed early on and that your daughter lives a healthy, active life! There is nothing, besides my children, I am more thankful for than medical advances and amazing doctors and nurses who take care of, help diagnose and help treat children. There is a very special place in heaven for these people! My son had a kidney condition that was diagnosed when I was pergnant with him, called hydronephrosis. It’s a treatable condition, that most children outgrow, and he has, thankfully, but he was in the hospital for 2 weeks as a 12 week old and again at 6 months due to a kidney infection. Seeing your children suffer and in pain is terribly hard and life changing. He also needed surgery last year to treat a serious case of pneumonia and was in the hospital for two weeks. Again, I was thankful we had such excellent medical care.
    Your post about your daughter’s medical condition was very touching.

  7. Kuddos to you on raising awareness. It’s so hard for families to feel struck by a rare condition, it’s heartwarming that they can feel their demise will help other families overcome the odds more easily.

    Internet will prove to be for a blessing.

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