Taking Care of Your Aorta 10/15/18 (Virtual Medical Symposium Series)
47:10-49:42
Q:
I knew this was gonna come up, physical activity. What do you tell somebody who is restricted, they can't play the sports they really want to play, they're taking their medications, they're taking their losartan or their beta blocker and they really want to play sports even though they know about the risk. I mean, how do you, I mean, people get free choice, but how do you counsel them to do with their best interest to protect themselves?
運動についての質問です。運動を制限されている患者さんがおられます。ロサルタンやβブロッカーなどの薬を飲んでいて、リスクがあることは分かっているが、それでもスポーツをしたいという方にはどのようなお話をされますか？
A:
Well, what I really try to do is really just try to understand how, they how the person I'm talking with feels and really what how they're willing to live their life, and as you said, it's, it's really I can make recommendations, but I really, I, I can't choose, choices for other individuals. Yeah and this is probably the most difficult part of caring for people with Marfan and related disorders.
私は目の前にいる患者さんがどのような生き方を望んでいるのかを真剣に理解しようとします。私にできることはアドバイスであって、患者さんに代わって決定することはできません。これに関しては、マルファン関連疾患の方の診察にあたって最も難しい部分なのです。
Thankfully, aortic dissection and complications in aorta are rare in athletes and that's probably because most people with Marfan syndrome are recognized early. There are people who've made it to the highest levels of competition and they're, and were never recognized and we don't really know what would have happened to them if they would have been allowed to continue because once they're recognized, they're not. So we don't really know; it's the truth.
幸い、アスリートでは大動脈解離や大動脈の病気は稀です。これはおそらく、ほとんどのマルファン患者さんが早期に発見されるからだと思います。マルファン症候群であることが分からないまま、スポーツで大変な活躍をしている方もいます。ですが、このまま続けていったらどうなるのかは我々にもわかりません。なぜらなら、マルファンであることがわかれば、もうそのスポーツを続けることはないからです。ですから本当にわからないと言うことしかできないのです。
There's very little data that to guide us objectively, so a lot of this is based on our best judgment and so what I try to tell people is to try to live the safest life you can, you have a lot of years ahead and, but, I but I wouldn't be able to give permission or blessing to do intense competitive athletics in the highest levels when one has a connective tissue disorder because it's, there's, there remains a risk of aortic catastrophe which could strike even if their arota wasn't markedly dilated.
マルファン患者さんの運動に関しては客観的に判断できるデータがほとんどないため、多くが我々の判断によるものです。私がお伝えできるのは、「安全な生活を送ってください。先は長いのですから」ということです。結合組織疾患の方に対しては、勝ち負けを競うような激しいスポーツを行うことを推奨することはできません。大動脈が大きく拡張していない場合でも、大動脈が破裂するリスクがあるからです。
And there's also um issues with the eyes and the bones and joints and what I would recommend is for people to take a look at this new resource that we have on our physical activity guidelines. They were updated. The guidelines weren't changed, but Dr. Braverman and the other doctors who work with, they really went to great lengths to explain what they worried about, so it's not just saying what they recommend but why and, so that everybody can make their best informed decision, I think, that's really important to know like, you know, what you worry about and so that they can, they can decide, you know, "Well, I'm going to worry about that too or not."
私の方からも補足します。眼や骨、関節の問題もありますので、私達が作成した運動に関するガイドラインをご覧ください。ガイドライン自体は変更されていないのですが、Braverman先生を始めとする先生方が注意すべきことについて説明してくださっています。推奨事項だけではなくその理由についても書かれており、皆さんが不安を解消して、最善の決定ができるようになっています。
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。
