{"description":"Should I tell my child that he or she has the Marfan syndrome? I'm surprised when a parent doesn't want to use the word Marfan syndrome. We've had some instances where parents come in and before they've prepped us that they don't use the word Marfan syndrome. \u79c1\u306f\u3054\u4e21\u89aa\u304c\u30de\u30eb\u30d5\u30a1\u30f3\u75c7\u5019\u7fa4\u3068\u3044\u3046\u8a00\u8449\u3092\u4f7f\u3044\u305f\u304c\u3089\u306a\u3044\u3053\u3068\u306b\u9a5a\u3044\u3066\u3044\u307e\u3059\u3002\u3054\u4e21\u89aa\u2026","url":"https://marfan-info.hatenablog.com/entry/2019/08/01/182628","title":"\u5b50\u3069\u3082\u306b\u30de\u30eb\u30d5\u30a1\u30f3\u75c7\u5019\u7fa4\u306e\u3053\u3068\u3092\u4f1d\u3048\u308b\u3079\u304d\u304b\uff1f","width":"100%","blog_title":"\u6d77\u5916\u30de\u30eb\u30d5\u30a1\u30f3\u60c5\u5831 | Global Marfan Updates","type":"rich","height":"190","author_name":"marfan-info","provider_url":"https://hatena.blog","version":"1.0","published":"2019-08-01 18:26:28","categories":["\u907a\u4f1d\u30ab\u30a6\u30f3\u30bb\u30ea\u30f3\u30b0"],"image_url":null,"author_url":"https://blog.hatena.ne.jp/marfan-info/","html":"<iframe src=\"https://hatenablog-parts.com/embed?url=https%3A%2F%2Fmarfan-info.hatenablog.com%2Fentry%2F2019%2F08%2F01%2F182628\" title=\"\u5b50\u3069\u3082\u306b\u30de\u30eb\u30d5\u30a1\u30f3\u75c7\u5019\u7fa4\u306e\u3053\u3068\u3092\u4f1d\u3048\u308b\u3079\u304d\u304b\uff1f - \u6d77\u5916\u30de\u30eb\u30d5\u30a1\u30f3\u60c5\u5831 | Global Marfan Updates\" class=\"embed-card embed-blogcard\" scrolling=\"no\" frameborder=\"0\" style=\"display: block; width: 100%; height: 190px; max-width: 500px; margin: 10px 0px;\"></iframe>","blog_url":"https://marfan-info.hatenablog.com/","provider_name":"Hatena Blog"}