米国マルファン症候群患者団体The Marfan Foundationからの情報を中心に、マルファン症候群や関連疾患についての海外情報を翻訳して発信します。

大動脈疾患に関する研究報告(Science in Paris) ~小児の運動~

Aortic Disease Research (9/19/22)




So there were a number of studies presented in Paris which looked at a quality of life in children who have hereditary thoracic aortic disease and as you might expect in general children who have genetic aortopathy have less physical activity than other children on average and there was a study which actually measured that in a fairly large number of children who underwent a maximum stress test, how much exercise does a person do before they get into what we call the anaerobic threshold, and on average in this study the, the children who had genetic aortic disease had about just 63 percent of the normal oxygen capacity with exercise that we see. 




And clearly this relates to a number of things. Clearly sometimes there's less muscle strength and not infrequently the medical profession is telling children who have thoracic aortic disease that's inherited not to do too much and this is a, this is a source of great frustration, I think, for for both patients and family members alike and an area that really must be attacked with science. 




I was delighted to see at the meeting about three or four or five presentations looking at exercise and these generally suggested that mild to moderate exercise appears to be safe. The French group led by Guillaume Jondeau in France even have an online tool that they recommend to their patients and families that actually gives them sort of an exercise prescription and I, I haven't actually seen the tool but I'm thinking, Joe, we may want to to make that link available to the audience so that they could possibly use it. Clearly this relates to family history, body habitus, the severity of underlying aortic condition etc., but we're all looking for more information that can guide activity and in fact I believe in two months there's going to be a webinar specifically focused on this led by Dr. Braverman and Siddharth Prakesh. 


研究集会では、運動に関し、3~5つの発表があったことは喜ばしいことです。これらの研究によると、一般に、軽度~中程度の運動は安全といえることが示唆されています。フランスのGuillaume Jondeau氏のチームが、患者さんやご家族に勧めているオンラインツールがあります。このツールは、運動の処方箋を与えてくれるものです。実際に私が目にしたわけではないのですが、そのツールのリンクを公開して皆さんに使っていただいてもいいのではないかと考えています。このツールは家族歴、体型、大動脈の基礎疾患などに基づきます。運動の指針となるより多くの情報が必要ですが、2ヶ月後に、Braverman先生、Prakeshs先生による運動に関するウェビナーがありますので、こちらもご覧ください。


Also the foundation is not standing idle. Foundation has just awarded a grant to have a study looking at this in a more coordinated way and this is so important. There was one study at the meeting which actually suggested that moderate activity might delay aortic growth in, in children with Marfan-related aortic disorders. 


The Marfan Foundation とて何もしていないわけではありません。運動に関する、より体系化された研究を対象とした助成金を出していますが、この取り組みは非常に重要であるといえます。今回の研究集会では、マルファン関連の大動脈疾患のお子さんが、運動強度が中程度の運動をすることで大動脈の拡張が遅くなることを示唆する研究がありました。


And if you think about this when we exercise our blood pressure goes up and so if, if there's a fear that the blood pressure is going up too high the natural tendency may be for physicians to say, "you know, we really should hold this down." On the other hand regular exercise actually promotes aortic health and if regular exercise actually lowers the resting blood pressure you could make the counter argument, in fact, that regular exercise if not extreme might be quite beneficial to the child and aortic health, so this is the area of great need for more research, the early returns for fairly small pilot studies suggests that mild to moderate exercises probably safe and we just need more information as we forge the future in this very important area. 




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。