はじめまして☆早朝から失礼いたします。
実は私もあなたと同じ「遺伝性血管神経浮腫」です。私も長年診断がつきませんでした。私の場合かなり重度みたいで3歳の頃発症しました。それから20歳まで病名がつかなかったのです。今では全身あちこち腫れ、顔面、咽頭浮腫もしょっちゅうあり入院したりします。もちろんﾍﾞﾘﾅｰﾄはよく使うのでお金が…。悩みもんです。私の場合も私以外身内でおりません。もちろん同じ病気の方と出会うのも無理な話しと思っておりました。なので今かなり震えております。よかったらお話したいです。

＞佳葉子さん
はじめまして。
いつか同じ病気の方の役に立てばと書いた記事なのですが、実際にこうしてお話ができる
時が来るとは思ってもいませんでした。私も驚いております。
発作が起きた時はもとより、いつまた発作が起きるかと不安を抱える日々もつらいものです
よね。心よりお見舞い申し上げます。

病名が確定してから、何か発作予防の対策などはしてらっしゃいますか？
私も自分なりに調べたりしたことがありますので、ぜひ情報交換致しましょう。
コメント欄では不自由ですので、よろしければ r-top@polaire.org までメールを下さい。
どうぞよろしくお願い致します。

佳葉子さんへ
お送り頂いたメールに返信しようとしたところ、エラーが返ってきました。
メールアドレスが間違っているということなので、お手数ですが再度メールを
頂けますでしょうか。
よろしくお願いします。

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