Kabuki Syndrome Network Japan Newsletter 歌舞伎ジャーナル  第13号



 歌舞伎症候群ネットワーク(以下、KSN)の会費を支払っている会員数は117家族に及びます。それ以外に約250-300家族からのお問い合わせがありました。そのうちのいくらかは、1度きりで終りました。また、メーリングリストのほうに参加されている方もいらっしゃいます。(注 KSNとリーリングリストは基本的に別組織になっている。そのことを知らない人が多い。)



 アフリカ系アメリカ人の子供…に関する限り、Dr. Milunsky'sの患者さんの1人はアフリカ系の人です。また、わたしたちは、南アフリカの3家族、ジンバブエの1家族を知っています。しかし、そのうちの2人はcauscasion.??です。別の家族はバーミューダ諸島からです。遺伝関連の記事で黒人の子供について書いてあるものもありました。わたしたちは、南太平洋諸島(トンガ)やカリブ海諸島そして極東(タイ、シンガポール)からも連絡を受けております。


  Kabuki Syndrome Network has 117 members - families who have paid a membership fee.

  KSN has been contacted by about another 250-300 families - after sending initial information,some of those we've never heard from again, others have subscribed to the mailing list but not KSN.

  There are 3 other KS groups - Holland, Japan, and England. I'm not sure on their numbers, but some of their members are also members of our 'North American' group.

  That's just the tip of the iceberg, though. Many have been diagnosed in Brazil and other South American countries who have not contacted us for varying reasons - access to computers, language barriers, etc.

  There are also likely hundreds diagnosed in Japan. But according to Toshinobu Ozeki who runs the KS group there, it is not so much a part of Japanese culture to seek support groups, so only a fraction of families there have contacted Toshinobu.

  As far as any children who are African American.....yes. I believe one of Dr. Milunsky's patients was African decent. We also have 3 families from South Africa and one from Zimbabwe, but I know for sure 2 of those are causcasion. Another family from Bermuda. Also one of the genetic articles featured a black child. We also have been contacted by families from South Pacific islands (Tonga comes to mind), various Carribean islands and various Far East countries (Thailand and Singapore).

  My best guess is that there are several thousand children diagnosed world-wide. And that's just the diagnosed cases.....remember, it's not an easy syndrome to diagnose.

  Let me know if I can help in any other way, Rene....and hope your presentation goes well!

  Bye for now,