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Kawasaki |
We are not alone.
The Kawasaki Syndrome Support Group was formed two years ago in England and has grown to a membership of about 250 families throughout the United Kingdom.
Its coordinator is Sue Davidson of Coventry, England. Dr. Nigel Curtis, a Medical Research Council clinician scientist at Imperial College School of Medicine, serves as its medical advisor. The group is linked by its own newsletter.
Curtis, who maintains a site on the World Wide Web describing the Kawasaki-related research by his group and citations to other research, said he would post links to the Kawasaki Families' Network Internet site and other Kawasaki sites on his homepage, as well as information about the UK support group.
"I am sure there are lots of ways that our national groups can help and enhance each other," Curtis said.
He said he planned to write a summary of his current research in layman's terms that could be disseminated to members of both groups.
The UK group recently held its first Family Day gathering in central England. More than 50 families gathered at a hotel, where entertainment and child care for the children was arranged so that parents could socialize and hear talks. Curtis, for example, spoke about his research into the cause of Kawasaki Syndrome.
Calling all multi-linguals: We recently received our first request for correspondence from a non-English-speaking Kawasaki parent. Javier Suarez, a father from Spain, sought a spanish-speaking family with whom to share his experiences. We found someone for him, but it occurs to us that there might be other Spanish-speaking families, or those with fluency in other languages.
If you speak languages other than English and are willing to correspond with families we may encounter, please drop us a line, via the e-mail link below.
Adverse reactions, anyone? Linda Andraschko wrote to tell us about her daughter's reaction to the intravenous immunoglobulin (IVIG) treatment, and she'd like to correspond with other families who had a similar experience. Write to her at: 5634 Tuckerman Drive, Colorado Springs, CO 80918.
Cardiologists to convene in Hawaii: A group of pediatric cardiologists will come away from a conference next spring with more expertise in using echocardiography, the ultrasound imaging technique used in tracking Kawasaki-related cardiac complications.
The world Congress of Pediatric Cardiology will convene next May in Honolulu. Among the seminars will be a practicum on echocardiography, with Kawasaki patients involved in the demonstrations.
Study sheds light on Coumadin effects: Dr. Masato Takahashi of the Division of Cardiology at Children's Hospital Los Angeles has prepared a paper on Coumadin (warfarin), the anticoagulant used by (among other groups) Kawasaki patients to avoid the development of clots in coronary aneurysms.
The paper, due for presentation at the American Heart Association in New Orleans, indicates that the drug helps patients with giant coronary aneurysms avoid stenosis (narrowing of the arteries) as well as thrombosis.
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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.
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