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rz60
僕のブログへようこそ
フリーページ
2007.09.03
カテゴリ： カテゴリ未分類
genikini123さんよりバトンを受けとりました。
この”こころのバトン”を回して頂くようにお願い致します。
《ムコ多糖症》
って病気を知ってますか？
この病気は人間の中でも小さい子達に見られる病気です。
しかし、この 《ムコ多糖症》
と言う病気はあまり世間で知られていません(日本では300人位発病)
つまり社会的認知度が低い為に今厚生省やその他製薬会社が様々な理由を付けて、もっとも安全な投薬治療をする為の薬の許可をだしてくれません。
《ムコ多糖症》
は日々病状が悪くなる病気で、発祥すると殆どの人が10～15歳で亡くなります。
8月7日「SCHOOL OF LOCK」というラジオ番組で湘南乃風の若旦那が語ってから私達に出来ることを考えました。
それで思いついたのがこのバトンという方法です。
5～6歳の子が厚生省にスーツ姿で出向いて自分達が生きる為に必死に頭をさげてたりしています。
この子達を救う為に私達ができる事は、この病気を多くの社会人に知ってもらって早く薬が許可されるよう努力する事だと思います。
みなさん協力お願いします。
[ムコ多糖症]
ムコ多糖を分解する酵素が先天的に欠損している為、体内に蓄積することで様々な異常が引き起こされる病気。
多くの場合、身体や精神の発達遅滞、骨の変形、水頭症なども伴う。重症の場合は成人前に死亡する。
今のところ有効な治療法が無いので、骨髄移植や遺伝子治療の臨床成果が待たれる病気の1つである。
http://www.muconet.jp/
★この本文を 日記に貼り付けてください。
お気に入りの記事を「いいね！」で応援しよう
お久しぶりです。
さら紗
さん
私は病院勤務です。興味深くブログ読ませていただきました。また私のブログにも掲載しました。またお邪魔します。
(2007.09.03 11:24:58)
さら紗さんへ
rz60
さん
書き込みありがとうございます。お久しぶりですね。
さら紗さんは病院にお勤めなんですね。
この”こころのバトン”を読んで頂いてありがとうございます。
さら紗さんも病気で苦労されてこられたんですね。
今からさら紗さんのブログに伺います。 (2007.09.03 15:59:52)
さら紗さんは病院にお勤めなんですね。
この”こころのバトン”を読んで頂いてありがとうございます。
さら紗さんも病気で苦労されてこられたんですね。
今からさら紗さんのブログに伺います。 (2007.09.03 15:59:52)
Re:こころのバトンを広げましょう！(09/03)
genikini123
さん
また広がったようで、良かったです（*^_^*）
(2007.09.04 00:03:35)
genikini123さんへ
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