CMT友の会に参加しました〜!

シャルコー・マリー・トゥース病をご存知ですか?

遺伝子異常が存在するため、神経が正常に機能するために必要な物質が発現しなくなる。そのため、神経の軸索もしくは髄鞘(ミエリン鞘)に異常が生じ、症状が現れるのだと考えられている。by wiki

〜CMT友の会ホームページから抜粋〜

私たちは、シャルコー・マリー・トゥース病(CMT)の当事者(患者)だけでなく、医療関係者、研究者、また患者のご家族などCMTに関わるすべての方々の情報共有と交流の場として、CMT友の会を発足しました。

どのような組織形態とするか、活動内容をどうするかなど、まだまだ検討することは多いのですが、こうしている間にもひとりで悩んでおられる当事者やご家族の方が多いことと考え、まずは、患者会をスタートさせて、活動しながら、柔軟に対応して行くことを前提に、情報発信と交流の場を作ることとしました。

現在、日本の医学研究の場においても、少しずつCMTに関する研究が進められていますが、まだ正確な患者数も把握できていない状況であり、私たちはこうした研究機関と患者をつなぐ窓口の役割も担っていきたいという思いがあります。

〜スマイルポイント〜

今日,CMT友の会主催春の交流会in横浜に参加してきました.

参加者はざっと50名程度.すごい!!さらに,厚生労働省の方も講演に来ていました!CMT友の会は勢いがあるなって思いました.

シャルコー・マリー・トゥース病は稀な疾患で現在根本的治療法がありません.リハビリテーションも実は確立されていない現状です.また,経験があまりない病院では適切なケアがされにくい事もあります.

理学療法士も参加していて,シャルコー・マリー・トゥースの筋力トレーニングについて研究されていました.どのくらい運動すればいいの?運動していいの?といった声に答えられるべく頑張ってくれていました.

また,足の変形や歩行についても今,装具療法を頑張っている理学療法士もいます.早い段階からプロの目で装具や足底板を導入する事で足の変形や歩き方を修正出来る可能性があります.足底板を作るだけで歩容や痛みは大分変わります.

装具や足底板を作っていくためには,医師・義肢装具師・理学療法士が連携していく事が重要ですが,現状では理学療法士が関わっていけない場合があるそうです.そこをどうして行くかは問題かなって思います.

やっぱり,友の会など現場に行って生の声を聞く事の重要さってものすごい感じました.病院では聞けない声もあります.病院の外でお酒を交わしながら話すからこそ聞ける声って本当に大切です.

日本で起こっている医療格差(過疎地域)でも適切な医療を作っていくにはどうしたら良いかのヒントも教えてもらいました.

少しずつですが,活動していってどんどんSmile Spaceを増やしていきたいなって思います.

 

 

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