We Break From Our Regularly Scheduled Drama To Do Something Good

Friday, October 2nd, 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.

Take it away, Kevin…

*

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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  1. Mamacita says:

    Please tell your friend that this disease can be dealt with. The first few years are rough, because that’s when the doctors are trying to balance medications with the individual’s unique body and equally unique symptoms, reactions, and re-reactions. Those first few years are also full of tests, many of them intrusive, painful, and involving cutting large chunks of your body off. Once the disease has been brought under semi-control, however, it’s not nearly as bad. Tell your friend to be sure his daughter never misses a dose, and always takes her meds at exactly the same time every single day. Even an hour’s difference can make an unbelievable difference. This disease is all about control. You control it, or it controls you. Parents have to be the controllers for a child, and this often brings about discord, because a child doesn’t always understand the severity of the disease, and what can happen if she doesn’t feel like taking her meds right now but probably will at lunchtime. It can’t happen like that. It won’t take long for the meds to get rid of the spots and rashes, but one slip-up and it will all come back and might even require starting all over again with the drug dosage experiments. The pain will also lessen, as long as the meds are taken correctly. After a while, she’ll feel normal again, and that’s when it’s easy to think, “I’m well, so I don’t need the meds now.” Of course, she always will. There will be doctor visits many times a year, and more tests – always more tests. When she’s a little older, she won’t be able to EVER miss a gyno appointment, and must check her breasts weekly. Stress and physical exertion can also “set off” new symptoms and reactions and re-reactions. Puberty will require a lot of adjustment, too. (In more ways than one!)

    But it can be lived with. Ask me how I know.

  2. Britt – For all you’ve been going through and still doing this for me, I offer you the biggest digital hug ever. Thanks so much. K

  3. yay for spreading the knowledge! man, i love this blogging thing. :)

  4. lceel says:

    And you, too. A grand way to use your space.

  5. Finn says:

    Happy Birthday to Rhonda. Sounds like she got the best present she could have hoped for back then — an answer.

    Thank you for sharing this with us.

  6. NATUI says:

    I hope you “educated” the first three doctors. In more ways than one. I am so glad Doc #4 got it right. We will celebrate for your family today.

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