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Kawasaki |
Welcome to the first edition of Heartlines, an informal and (for now) irregular newsletter serving as a link for the fledgling Kawasaki Families' Network, based in Hawaii but including families in nine states. The purpose is to share information and support among those affected by Kawasaki Syndrome (Kawasaki Disease).
Those of us living in Hawaii have the option of scheduling meetings if we wish, but most of us rely on the U.S. Postal Service and telephone systems for connections. This newsletter circulates from the home of Vicki, Dale and Juliette Machado in Kaneohe, Hawaii. Any ideas on how to make it more useful and any general feedback can be directed to them by E-mail:
Please leave us your address if you'd like to start receiving this newsletter, and other information, by mail.
Do you have burning questions about Kawasaki you'd like to ask? (We mean besides the obvious one: What causes this awful disease? A lot of people have been working on that.) We'd like this newsletter to provide what answers there are. We're planning a regular Q-and-A column here, using a combination of published and interview sources, all attributed. Let us know what you'd like to know.
Several members of the network have already found some support through something called the National Organization for Rare Disorders. NORD offers database reports on hundreds of rare ailments, including one on Kawasaki Disease, for $5, including postage and handling. You can write to NORD at 100 Rt. 37, P.O. Box 8923, New Fairfield, CT 06812-8923. Phone: (203) 746-6518. Fax: (203) 746-6481. TDD: (203) 746-6927. There's also a Web site through which you can order one:
But more valuable than the report is the NORD networking program. The $25 membership covers a newsletter on "orphan diseases and gives you a mailing list of other Kawasaki families willing to correspond.
Alternately, we can be your link to other families. Let us know if you'd like your address shared with others affected by Kawasaki Syndrome. Only the names of those who choose this option will go on a separate list that will be available on request.
The May 2 episode of the hit series "E.R." included a surprise reference to Kawasaki. OK, so it was just a fleeting bit toward the end, but we take our public-awareness victories where they come. In the story, a medical novice nearly dismisses an infant with "the flu." Another doctor recites a checklist of symptoms and gives the revised diagnosis--Kawasaki Syndrome--and sends the baby to be admitted and checked for aneurysms.
We wondered whether there was some special reason to pick out Kawasaki, but an NBC publicist told us it was just something the show's researchers picked up. Whatever the reason, it was good publicity!
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We welcome your suggestions, too. Please notify us by e-mail if you have any questions or ideas, or if you would like to add your name to our mailing list (and leave your mailing address in the message).
Send comments to: kawasaki@compuserve.com We'd love to hear from you. Let us know if it is OK to list you on our "Families" page.
Web design by Greg Wiles
Illustration by Marcel Isler