This week Happy Hour Friday is a "two-fer."
In addition to my regular post I'm including a Pay it Forward Post,
It's time once again for Happy Hour Friday!As part of today's Happy Hour Friday, please take a moment to pay it forward by reading this post from Kevin at Always Home and Uncool. So many obscure diseases don't get the attention and financial support for a cure that they should because people just plain don't know about them. I know this one was new to me. (Be sure to click on the links and visit Kevin to show your support.)
Kevin of Always Home and Uncool has asked a whole slew of blogs 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.
*
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 thephysical 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.
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 atwww.curejm.org.
To make a tax-deductible donation toward JM research, go towww.firstgiving.com/rhondaandkevinmckeeverorwww.curejm.com/team/donations.htm.
*****
Kevin of Always Home and Uncool has asked a whole slew of blogs 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.
*
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 thephysical 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.
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 atwww.curejm.org.
To make a tax-deductible donation toward JM research, go towww.firstgiving.com/rhondaandkevinmckeeverorwww.curejm.com/team/donations.htm.
*****
Want to participate, but can't contribute? Re-post this on your blog today and leave a comment on Kevin's blog!
16 comments:
Congrats on your award. I toast to you with a frosty glass of Dr. P.
I am soooo glad I don't have the crossword before bed obsession. It would take me so long to finish it that I would be awake three years later ;0)
Congrats! And thanks! And...I have been meaning to tell you...I think I sort of took one of your blankets, accidentally of course. Oops.
Congratulations on your award. I love Dr. Pepper too but opt for the diet variety. Thank you so much for this award. I will proudly post about it on Sunday.
Mami: Cheers! And thanks!
Eternally Distracted: I haven't actually slept in years... which may explain a few things.
Nanodance: What? You fiend! Unhand that blanket! (and take me for a ride in your new car once you get it.)
Peach Tart: I'm a Pepper! She's a Pepper! Wouldn't the rest of you like to be a Pepper, too?
I haven't had a Dr. Pepper in years! Sounds rather good! And pass the fortune cookies....yum! I need a good fortune today!
Another vote here for Diet Dr Pepper (DDP). I get stupid enough without the extra sugar.
Thanks for the repost! I added you onto my site.
K
Betsy: Wishing you good fortune every day! I love the taste of the fortune cookies, too!
Maelstrom: I keep trying to like Diet Dr. Pepper, but I can't stand the diet aftertaste. *sigh*
Steve: Happy to help out! Best of luck to you and your family. Happy Birthday to Mrs. Not Always Home and Uncool.
I just read the first part of your post on Mean Girl Garage - I'm really glad the word is getting out there .
The rest of my family shares a Dr. Pepper obsession too. I, personally, think it tastes like a combination of prunes and old shoes.
Which is good if you like that, I guess. :)
Happy Friday!
Hi CatLady! Congrats on yet more awards. I hope you have them stacked precariously in your spare room? I also salute your choice of the Doctor's Finest! Indigo
Thank you for helping Kevin raise awareness today, you're awesome!
And, congratulations, not only is your blog fabulous...so are you! Have a wonderful weekend.
Ok I'll check him (Kev) out. Great pay it forward post, CatLady - it DOES feel good, doesn't it? Thanks for the leads to other good blogs. Loved the post, as always.
The Old Silly
That is a very sad disorder, I read about it this morning on another blog. I am happy that it is getting attention!
I'm glad you posted this because I was out of town when it first came out. Beautiful.
Vic: Prunes and old shoes? I can taste the prune, but I not the old shoes... how often do you dine on old shoes?
Indigo: I'll raise a tall one in your honor as I sit amongst my accolades in the trophy room.
Me-Me: Happy to help out! It looks like they're well on their way toward their goal!
Old Silly: The best thing about the awards is the link to other great bloggers!
Otin: I'd never heard of it either... the sad thing is that it can go undetected if people aren't aware of it. And since it can be treated if caught early on, it's imperative to get the word out.
Kim: Even if we overload the blogosphere for a few days with these posts, it's worth the time and space!
Post a Comment