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Kawasaki |
Please forgive the delay in getting out newsletter No. 3. For some of us, it seems, procrastination is a way of life!
Meanwhile, the group continues to grow. At last count, the mailing list fell just shy of 100 names, from 25 states and from Canada, France, Spain, Germany, the Netherlands, Singapore and Malaysia. Considering that most of these have trickled in from the Internet -- and considering how relatively few people use the Internet -- we can only guess how many folks we're missing.
Kawasaki parents keep asking how their experiences stack up against others in the network. From where we sit, at least, encounters with this disease appear to run the full gamut. Some report exceptionally good luck. Carol Freed of Santee, Calif., said her physician had just returned from a seminar on Kawasaki and suspected it on Day 2. In other cases, especially in small towns where the disease is seen infrequently, the diagnosis proved more elusive. Shelly Hyatt-Blankman of Columbia, Md., said her son went 12 days until his symptoms were recognized. Some receive the proper care with no headaches; one parent reported fighting her medical insurance provider to get coverage for echocardiogram tests.
There's a full range of emotional responses, too, from parents and professionals -- gratitude, anger, defensiveness, frustration, you name it. It's always tough enduring the serious illness of a child, more so when on unfamiliar territory. May parents write to express their relief that someone has heard of "their disease," that there are people to whom "Kawasaki" means something other than a motorcycle.
That's why it's always encouraging to hear about efforts to raise awareness in the medical and general community. Several parents became subjects of newspaper stories; more than one has written articles themselves. We've heard from two nursing students (one a Kawasaki parent herself) who have worked on research papers (and we've heard from more than one parent who said it was a nurse who first raised the possibility of Kawasaki as a diagnosis.
Measures like these are the proverbial drops in the bucket, perhaps, but we take every bit of consciousness-raising we can get. You never know how it might help. Lisa Manning of Trenton, Ill., wrote to say that after their first trip to the ER, a stranger at a business meeting overheard her story and asked if she'd heard of Kawasaki Disease. The woman, an English teacher, had a student who had the disease as an infant and had written a paper on it. She happened to have the paper in her car, too, and shared a copy. Lisa and her husband did more research on their own, and felt prepared when the diagnosis finally came.
If anyone spots an opportunity to raise awareness, grab it. And then let us know what happens.
Vicki, Dale and Juliette
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