Should I tell people that I have Marfan syndrome?
Often children with Marfan syndrome feel the need to try to hide their condition. They don't want to admit to anyone else that they are different even though often it's quite obvious that there is something different about them because of physical features. That anxiety, that emotional energy that's used to try to hide their condition, I think, can be physically and emotionally exhausting.
マルファン症候群のお子さんは病気を隠そうとすることが多く、体型など、他の人と明らかに違っている部分があるとしても、そのことを認めたがらないのです。病気への不安であったり、病気を隠すために精神的なエネルギーを使うことで、肉体的・精神的にヘトヘトになってしまうこともあります。
My recommendation is that people should be upfront about Marfan syndrome or any other difference. They should just acknowledge it: "Hey, my arms are long because I have Marfan syndrome. I have to go to the hospital on occasion because I have a medical condition. You know what? You have funny ears. Let's go play video games." I mean just get it out in the open, acknowledge it and move on. I, I think that that is a very important, productive event for children and families with Marfan syndrome.
私が推奨しているのは、「ねえ、見てよ。僕の腕は長いだろう？マルファン症候群だからね。病気だから時々病院に行くんだ。そういえば、君の耳の形は面白いね。一緒にテレビゲームしない？」といったように、病気を受け入れて、正直に打ち明けるということです。このことは、マルファン症候群のお子さんやご家族にとっては、何かのきっかけになる非常に重要な出来事となると考えます。
The Marfan Foundation did not participate in the translation of these materials and does not in any way endorse them. If you are interested in this topic, please refer to our website, Marfan.org, for materials approved by our Professional Advisory Board.
The Marfan Foundation は、当翻訳には関与しておらず、翻訳内容に関してはいかなる承認も行っておりません。このトピックに興味をお持ちの方は、Marfan.org にアクセスし、当協会の専門家から成る諮問委員会が承認した内容をご参照ください。
