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September 25, 2006

炭水化物がにがてな子も

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 私が役員をしている日本肝臓病患者団体協議会には、ウイルス肝炎の地域患者会の他に、疾病別の患者会も2つ加盟しています。
 劇症肝炎家族会とシトルリン血症の会です。
 両方の会から相次いでお便りをいただきました。劇症肝炎の会からはお便りというよりは、日肝協に対する「要請」です。この方は、日を改めてご紹介します。

 「シトルリン血症の会」、から、大阪交流会を10月7日に高槻市生涯学習センターで開催するという案内でした。

 せっかく大阪で開催され、難しい病気のようなので勉強のために参加することにしました。会からは、事前に勉強しておくようにと、たくさんな資料を届けていただきました。(写真は、厚労省の研究グループが作成した患者家族向け小冊子。)

 

 「シトリン欠損症」、身体の中(主に肝臓)で、「シトリン」というタンパクを上手につくることができない病気。子どもの時と、大人の時では、症状がまったく違うために、
 子どもの病名:新生児肝内胆汁うっ滞症
 大人の病名:成人発症2(アラビア数字)型シトルリン血症

 幼児期から学童期のと病気の特徴の一つとして、糖質を嫌う傾向があるそうです。パンやご飯、果物やジュースなどが食べられないのです。低血糖を起こしたり、何度も下痢を起こしたり、膵炎を起こしたりするとのことです。
 思春期から成人期:血中アンモニア、シトルリンの上昇。

 患者と家族の会「シトルリン血症の会」が結成され、移植医療、難病対策の「特定疾患」のび認定など、療養生活への支援を求める活動を活発にされています。

 今回の大阪交流会には、小林 圭子先生(鹿児島大 分子病態生化学)、乾 あやの先生(横浜栄共済病院小児科)、岡野 義行先生(大阪市立大学 発達小児医学)、佐伯 武頼先生(徳島文理大 人間生活学部食品栄養)、
池田 さやか先生(田上病院小児科)らが参加され、原因、病気の進み方、肝臓の話、治療法、治療薬、食事、日常生活など多方面からの説明と参加者との交流が予定されています。


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Comments

~「肝臓のなかまたち」にシトリン欠損症のパンフの写真と説明文が載っていますが、厚労省の
研究班ではなく国立成育医療センターの研究班(松原班)ですね。~

と先生からメールがきました。国では研究していないということです。

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