How do people get Marfan syndrome? Girl: I was wondering how people get marfan syndrome. How does it start out with it? 女の子： どうしてマルファン症候群になるんですか？原因は何ですか？ Dr Liang: Okay, how do people get Marfan syndrome? Ok…

2018年2月27日Kacey Lamphier 2月は心臓月間ということで、私にとっては特別重要な月です。私は30年間マルファン症候群と共に生きてきましたが、診断を受けたのは22年前です。私は日々マルファン症候群についての自らの体験や知識を広げる活動をしています。…

2019年2月11日 Sarah E. McMillan はじめに 思春期と慢性疾患 自覚 アイデンティティとマルファン 受容とマルファン 医療とQOL はじめに 自分の病気のことを話題にしたくなくて、新しい友達の輪に入って、少し（orメチャクチャ）喋り過ぎたことはありません…

How can parents advocate for their children? Woman A:You need to listen to your physicians, but you also need to question. You can do it nicely. There's many ways, right ways to get the best answers, but you really need to keep going forth…

Why are you hopeful? Man A:I'm hopeful because every year you hear about new advances in the science in the treatment, there are new advances as kids grow, you know, we've seen that the kids over the years who grown up with Marfan and seei…

What is the emotional impact of the diagnosis on the family? Man A:I do think it's probably a good combination to have somebody who's very emotional and, and, and pushing and somebody who can keep you grounded and, you know, that everythin…