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

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…

大動脈手術後の生活についてのオンライン座談会 ~最後に~

Personal Perspectives Panel: Life After Aortic Surgery 1:01:13-1:05:14 For our last question and then we go back then we'll finish it up with some housekeeping, so today it's, in, Victoria, one year past surgery, the rest of you a little b…

大動脈手術後の生活についてのオンライン座談会 ~薬(医師の解説)~

Personal Perspectives Panel: Life After Aortic Surgery 58:58-1:01:07 So David, can you just talk a little bit about why people are taking medication before there's, before and then why they have to continue taking it afterwards? David先生…

大動脈手術後の生活についてのオンライン座談会 ~薬~

Personal Perspectives Panel: Life After Aortic Surgery 57:05-58:56 Let's go on to medications a little bit. So people with Marfan, Loeys-Dietz are what they know they have it, Lauren, are typically taking medications, you know, for their b…

大動脈手術後の生活についてのオンライン座談会 ~手術後の食事・栄養~

Personal Perspectives Panel: Life After Aortic Surgery 53:33-55:50 A lot of people also asked about, about diet and nutrition, so I'm curious who on here might be have had to change their diet maybe because of warfarin and oh, what they th…

大動脈手術後の生活についてのオンライン座談会 ~下行大動脈手術からの回復(医師の解説)~

Personal Perspectives Panel: Life After Aortic Surgery 51:52-53:30 David, is, is recovery harder for somebody who is, who has surgery for the descending aortic aneurysm than what, these folks have had, there's a similar experience? David先…

大動脈手術後の生活についてのオンライン座談会 ~手術後に助けてくれる人たち~

Personal Perspectives Panel: Life After Aortic Surgery 48:07-51:12 Somebody else asks us really, this really great question, they pre-submitted this. What would you say to your caregivers, I mean, there's a lot of people that are participa…

大動脈手術後の生活についてのオンライン座談会 ~入院時にあったほうがいいもの~

46:55-48:07 Dominga, did you have something to add? Domingaから何か付け足しはありますか? I did actually because this actually has reminded me of a lot of things having this conversation. The, the breathing apparatus that Victoria mentione…

大動脈手術後の生活についてのオンライン座談会 ~手術前に知っておいてもらいたいこと(医師の解説)~

Personal Perspectives Panel: Life After Aortic Surgery 45:01-46:53 David, is there anything else that you tell your patients ahead of time before they go into surgery? You're on mute. では、David先生、手術前に患者さんに知っておいてもらいた…

大動脈手術後の生活についてのオンライン座談会 ~手術前に知っておいてもらいたいこと(医師の解説)~

Personal Perspectives Panel: Life After Aortic Surgery 45:01-46:53 David, is there anything else that you tell your patients ahead of time before they go into surgery? You're on mute. では、David先生、手術前に患者さんに知っておいてもらいた…

大動脈手術後の生活についてのオンライン座談会 ~手術前に知っておきたかったこと~

Personal Perspectives Panel: Life After Aortic Surgery 40:44-45:01 So, so I don't know if everybody saw but Dominga wrote this great blog post on our blog about top five things that she wish she knew before aortic surgery. I wanted and I'l…

大動脈手術後の生活についてのオンライン座談会 ~術後の妊娠・出産~

Personal Perspectives Panel: Life After Aortic Surgery 38:51-40:43 I don't, I mean, I can give my personal story with it. So I was diagnosed at 16 and, you know, they always said that it would be, you know, a risk factor obviously to get p…

大動脈手術後の生活についてのオンライン座談会 ~手術後の妊娠・出産(医師の解説)~

Personal Perspectives Panel: Life After Aortic Surgery 36:33-38:49 There's something else a lot of people asked about and I'm going to go to David first and to you on this as well and we'll see if anybody else wants to comment. There are a…

大動脈手術後の生活についてのオンライン座談会 ~術後の体の不調への対処法②(医師の解説)~

Personal Perspectives Panel: Life After Aortic Surgery 34:18-36:28 Do you, do you prescribe like PT, cardiac rehab all that afterwards so they have like, like formal exercise after surgery before they get, let on their own and you get reje…

大動脈手術後の生活についてのオンライン座談会 ~術後の体の不調への対処法①(医師の解説)~

Personal Perspectives Panel: Life After Aortic Surgery 31:17-34:17 So David, some people actually asked, I mean, a lot of great questions but some people said, "Well what if you don't listen to your doctor's orders and what if you don't do…

大動脈手術後の生活についてのオンライン座談会 ~手術後の運動~

Personal Perspectives Panel: Life After Aortic Surgery 24:39-31:16 So that's great. Let's, let's see how it looks in real life. So Peter, let's go to you, so tell us about what you do and if it's and if it's really bad don't say it out lou…

大動脈手術後の生活についてのオンライン座談会 ~手術後の運動(医師の解説)~

Personal Perspectives Panel: Life After Aortic Surgery 21:42-24:39 I want to go to David for the next question. A lot of people asked about going back to exercise after their operation and after recovery or during recovery or what could th…

大動脈手術後の生活についてのオンライン座談会 ~画像検査結果が出るまでの不安~

Personal Perspectives Panel: Life After Aortic Surgery 19:07-21:41 Now there's another part of the mental part and Lauren and I were talking about it on the phone yesterday because you still have to watch the rest of your aorta and be moni…

大動脈手術後の生活についてのオンライン座談会 ~術後のメンタルヘルス~

Personal Perspectives Panel: Life After Aortic Surgery 14:29-19:06 You know, so some people asked about the mental, the mental process as well. It's not just physical recovery and also as you move on in your life but, you know, during this…

大動脈手術後の生活についてのオンライン座談会 ~手術からの回復(医師の解説)~

Personal Perspectives Panel: Life After Aortic Surgery 11:35-14:28 Everybody sounds pretty similar. David, what do you tell patients about what to expect and what they can do to help their recovery? 皆さん、術後については同じような経験をさ…

大動脈手術後の生活についてのオンライン座談会 ~回復までの経過~

Personal Perspectives Panel: Life After Aortic Surgery 8:32-11:34 So let me, let me get to our panelists, so what was, what was let's start with right after surgery, what was recovery like for you, were you, were you tired for a long time,…

大動脈手術後の生活についてのオンライン座談会 ~手術年齢について(医師の解説)~

Personal Perspectives Panel: Life After Aortic Surgery 5:58-8:26 Now we're going to go to David and I'm not going to ask you how old you are but we want to get a little we're going to lay the foun... では、David先生に話を伺いたいと思います…

大動脈手術後の生活についてのオンライン座談会 ~手術と年齢~

Personal Perspectives Panel: Life After Aortic Surgery 3:49-5:56 So Hi, everyone. I'm Peter. I am, I had my first surgery planned a month after I graduated high school, so I was 18 at the time. I had it down at Boston Children's Hospital. …

大動脈手術後の生活についてのオンライン座談会 ~パネリスト紹介~

Personal Perspectives Panel: Life After Aortic Surgery 2:37-3:48 So tonight we have five panelists, who are amazing. では、今夜参加していただく5名の素晴らしいパネリストの方をご紹介します。 As Michael said, we have Dr. David Liang, who's a …