海外マルファン情報

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。

オンライン座談会

28歳マルファン男性の経験談

Personal Perspectives Panel: Physical Activity & Exercise 58:50-1:01:58 So do you, I mean, obviously the heart and aortic issues are the biggest concerns but, you know, they also talked about, we have our physical activity guidelines, whic…

結合組織疾患でも筋肉は付くか?

Personal Perspectives Panel: Physical Activity & Exercise 56:38-58:17 Mary, I wanted to ask you because Alan, you know, Alan's talking about all this weight work. A lot of people are worried about, are concerned about building muscle mass …

ウェートを使った運動からエクササイズバンドを使った運動へ

Personal Perspectives Panel: Physical Activity & Exercise 54:37-56:31 So I'm going to go over to Alan Tucker now. I mean, Samantha, we left Samantha off. Samantha was talking a little bit about knowing her body. Somebody is asking, Alan, y…

運動としての性行為

Personal Perspectives Panel: Physical Activity & Exercise 53:50-54:28 The, the one question somebody did ask just about intimacy so I didn't. Before I end I will say that we, we do address this in in our writings. 性行為に関する質問もいた…

水泳のトレーニングで気を付けたこと

Personal Perspectives Panel: Physical Activity & Exercise 51:18-53:09 Samantha, people want to know about your about your swim workouts and how did that change when you were diagnosed? 水泳のトレーニングについて、サマンサさんに質問が寄せら…

子どもの運動についての母親の考え

Personal Perspectives Panel: Physical Activity & Exercise 47:43-51:18 Morgan, can you just build on that? You know, do you, what does your son do in PE class and do you feel like he's getting enough exercise outside of school and maybe tal…

運動に関するオンライン座談会 ~医師による質問への回答~

Personal Perspectives Panel: Physical Activity & Exercise 44:12-46:26 Some of the questions were about, you know, what is an orthopedist, the right person? It might be, it might be a chiropractor, an orthopedist, a physiatrist, a physical …

運動に関するオンライン座談会 ~運動に対するアドバイス~

Personal Perspectives Panel: Physical Activity & Exercise 43:01-44:11 So I think that just hearing how healthy the choices that you guys made, I mean, and it's such great advice but it takes time to get to that and just like Morgan's son i…

運動に関するオンライン座談会 ~Braverman医師の兄~

Personal Perspectives Panel: Physical Activity & Exercise 41:27-43:00 Thank you so much. I do have questions for each of you but I want to kind of take this question to our two doctors. パネリストの皆さん、ありがとうございました。いくつか…

運動に関するオンライン座談会 ~パネリスト③(12歳男児 血管型エーラス・ダンロス症候群 の母親)のお話~

Personal Perspectives Panel: Physical Activity & Exercise 37:29-41:26 Morgan, as a parent I know a lot of, a lot of parents want to protect their kids and also direct them and then at the same time they're athletes like you are and, you kn…

運動に関するオンライン座談会 ~パネリスト②(29歳女性 ロイス・ディーツ症候群)のお話~

Personal Perspectives Panel: Physical Activity & Exercise 36:02-37:25 Samantha, you want to talk about the mental aspect a little bit? サマンサさんは、スポーツからどのような精神的影響を受けましたか? Yeah, so when I had to make a lot of my…

運動に関するオンライン座談会 ~パネリスト①(28歳男性 マルファン症候群)のお話~

Personal Perspectives Panel: Physical Activity & Exercise 31:46-36:01 Yeah, so I just wanted to kind of start the discussion off with a little bit about like your attitude about exercise and fearing, figuring out what's right for you becau…

運動に関するオンライン座談会 ~パネリスト③ 12歳男児(血管型エーラス・ダンロス症候群)の母親~

Personal Perspectives Panel: Physical Activity & Exercise 30:07-31:44 We have another perspective now and this is Morgan's perspective as a parent of a, of a son with more with, with vEDS so go ahead, Morgan. 最後はモーガンさんです。モーガ…

運動に関するオンライン座談会 ~パネリスト② 29歳女性 ロイス・ディーツ症候群~

Personal Perspectives Panel: Physical Activity & Exercise 28:09-30:01 Thanks so much. Definitely have some questions for you. I'm gonna toss it over to Samantha now so if you tell us a little bit about your story and what, you know, physic…

運動に関するオンライン座談会 ~パネリスト① 28歳男性 マルファン症候群~

Personal Perspectives Panel: Physical Activity & Exercise 25:52-28:08 So now what I'd like to do is invite our other panelists back, Alan, Morgan and Samantha. And I'd like to do is have you each talk a little bit about, just take a couple…

運動に関するオンライン座談会 ~娯楽的運動のガイドライン~

Personal Perspectives Panel: Physical Activity & Exercise 23:37-25:40 So what about recreational exercise? We talked about the guidelines for competitive. 勝ち負けを競うスポーツに関するガイドラインについては紹介しました。では、娯楽目的で行…

運動に関するオンライン座談会 ~大動脈解離後の運動に関する研究~

Personal Perspectives Panel: Physical Activity & Exercise 22:32-23:35 Exercise provides many important benefits. 運動には多くのメリットがあります。 In a survey of 314 survivors of aortic dissection those who exercise regularly experience l…

運動に関するオンライン座談会 ~マルファンマウスでの研究結果~

Personal Perspectives Panel: Physical Activity & Exercise 21:41-22:30 I was alluding to some recent research that has been published. This is from 2017 by Gibson's team. Recent mouse studies has suggested that mild to moderate dynamic exer…

運動に関するオンライン座談会 ~薬の作用~

Personal Perspectives Panel: Physical Activity & Exercise 20:52-21:39 It's important to emphasize also that medications can have a significant impact on physical activity and a lot of times in different ways. 運動に対しては薬も大きな影響を…

運動に関するオンライン座談会 ~マルファン関連疾患アスリートの運動ガイドライン~

Personal Perspectives Panel: Physical Activity & Exercise 18:49-20:51 So looking at the best data that we have available what do the guidelines recommend regarding competitive sports in people with Marfan syndrome and related disorders? Ma…

運動に関するオンライン座談会 ~運動中の大動脈解離の発症率~

Personal Perspectives Panel: Physical Activity & Exercise 16:31-18:40 Thankfully dying suddenly when you're an athlete is very, very rare so it's a rare phenomenon in general and of that rare complication only two percent of death in athle…

運動に関するオンライン座談会 ~アスリートの大動脈に関する研究~

Personal Perspectives Panel: Physical Activity & Exercise 14:45-16:30 What about if I exercise over time? Does it have any impact on my aorta? Next slide. では、長期間にわたって運動を続けた場合はどうなるのでしょうか?大動脈への影響はあるの…

運動に関するオンライン座談会 ~運動による大動脈への影響~

Personal Perspectives Panel: Physical Activity & Exercise 12:45-14:44 I'm going to speak a little bit about a concern that many people have. This is "If I exercise, will that cause harm to my aorta? What do we know about that?" Well, next …

運動に関するオンライン座談会 ~運動強度と衝突リスクに基づくスポーツ分類~

Personal Perspectives Panel: Physical Activity & Exercise 10:55-12:39 In general systolic blood pressure may increase by eight to twelve millimeters of mercury per MET of aerobic activity. Since blood pressure directly impacts aortic wall …

運動に関するオンライン座談会 ~MET~

Personal Perspectives Panel: Physical Activity & Exercise 8:38-9:59 Although we often talk about exercise as a general category it's really important to emphasize that not all types of exercise are the same. Certain activities lead to more…

運動に関するオンライン座談会 ~大動脈に問題がある場合~

Personal Perspectives Panel: Physical Activity & Exercise 7:33-8:21 And then the aorta is different in everyone. On the slide to your left, next slide, will have an arrow pointing to the aorta in someone that looks normal so that's a norma…

運動に関するオンライン座談会 ~運動による血圧上昇以外の影響~

Personal Perspectives Panel: Physical Activity & Exercise 6:45-7:30 In some people it's not just the blood pressure response or the aorta that we think about but of course risks to other other parts of the body that can be involved. 運動に…

運動に関するオンライン座談会 ~運動時の心拍数~

Personal Perspectives Panel: Physical Activity & Exercise 5:30-6:43 People ask about a heart rate during exercise. That's really kind of tricky because everybody's heart rate starts at a different level especially if you're on medication y…

運動に関するオンライン座談会 ~安全と考えられる運動~

Personal Perspectives Panel: Physical Activity & Exercise 3:46-5:29 So what do we know about exercise? How much is safe? It really depends, what's the condition, what's the condition of the aorta, what's the age of the individual, what typ…

運動に関するオンライン座談会 ~運動の重要性~

Personal Perspectives Panel: Physical Activity & Exercise 2:20-3:41 Welcome and it's a privilege to be here with everybody today as Eileen said Mary and I are gonna tag team and really just give some basic information and kind of a broad o…