Staying Healthy & Exercising Safely 31:16-32:43 Q: This is a recurring theme, so um, there seems to be a lot of guidance around pre-surgery. What about post-surgery? Does surgery significantly reduce the likelihood of adverse events? 繰り…

Staying Healthy & Exercising Safely 20:20-28:15 So, that was the rationale for a randomized control trial which is wrapping up this year. The goal here was really to determine how exercise affects blood pressure and mental health in people…

Staying Healthy & Exercising Safely 15:41-20:19 So, we designed an exercise circuit to test the safety of exercise for patients, initially in our clinic and then in a randomized trial. I'll go through the exercises that we used briefly, bu…

Staying Healthy & Exercising Safely 9:12-15:41 We do have some data coming out. These are observational studies of people who survived dissections, both in IRAD and in Europe, showing that if you are supervised during cardiac rehab after a…

Staying Healthy & Exercising Safely 8:10-9:10 So this chart has traditionally been used to kind of break down sports activities by intensity. On the left side, you can see a static component―that is, the contraction of muscles that are req…

Staying Healthy & Exercising Safely 6:20-8:08 And we also know that not all exercises are created equal, so it may not make sense to put a blanket ban on certain types of activities. For example, blood pressure responds differently to diff…

Staying Healthy & Exercising Safely 4:35-6:19 We know that anecdotal reports have linked some types of exercise, primarily heavy weightlifting, with aortic dissection. And as I mentioned, there isn't a lot of evidence about the safety of e…

Staying Healthy & Exercising Safely 1:53-4:34 Let me start over with a brief summary for those of you who are just joining. I'm going to be talking about exercising―exercise safety and the effectiveness of exercise for people with thoracic…

Marfan Basics: Taking Care of Your Aorta 1:21:47-1:27:09 So like Eileen mentioned, my name is Dr. Haniff. I'm a Physical Medicine and Rehab physician at the Cleveland Clinic, and then pursuing hospice and palliative training at the Univers…

Hearing and Ear Findings for Marfan Foundation Annual Conference この研究は、希少な結合組織疾患である**ロイズ・ディーツ症候群（LDS）**の患者における聴覚および耳の所見について調査したものです。 以下に主要な点をまとめます。 • ロイス・ディー…

What's New in LDS Research - Dental Development for Marfan Foundation Annual Conference ロイス・ディーツ症候群（LDS）患者の歯科発達に関する最新の研究について、米国国立歯科頭蓋顔面研究所（NIDCR）のジャニス・リー博士が講演しました。 この研究…

Marfan Basics: Taking Care of Your Aorta 1:19:43-1:20:47 Q: We have somebody on who is 28 years old with Marfan and says he's fit. Um, he's going to be going to Machu Picchu, so he's wondering, um, is altitude pose a higher risk for Marfan…

Marfan Basics: Taking Care of Your Aorta 1:16:41-1:19:21 So, our studies have shown that athletic activity after diagnosis is possible. There are even people doing competitive athletic activities―these are not officially sanctioned, but th…

Marfan Basics: Taking Care of Your Aorta 1:15:46-1:16:40 So, during our clinical trial, we found that people did generally very well, but the number of, um, kind of problems they had during exercise seemed to be directly related to the num…

Marfan Basics: Taking Care of Your Aorta 1:14:55-1:15:46 So there are really three types of high blood pressure that we're talking about when we talk about aortic disease. One is the condition of your aorta and blood vessels ― so in other …

Marfan Basics: Taking Care of Your Aorta 1:12:22-1:14:55 So, uh, the other thing to consider is that the type of exercise that you do affects the way your blood pressure responds to exercise and your aorta responds to exercise. So we talk …

Marfan Basics: Taking Care of Your Aorta 1:10:11-1:12:20 And so the two kinds of medications we recommend are ARBs or Angiotensin receptor blockers, which you probably have heard of, like Losartan, and beta blockers, like Metoprolol or Ate…

Marfan Basics: Taking Care of Your Aorta 1:09:33-1:10:09 So, again, before starting exercise, it's really important to make sure that your blood pressure is controlled. This is from the guidelines. We typically say, you know, for high bloo…

Marfan Basics: Taking Care of Your Aorta 1:06:14-1:09:32 So, there are a few things that you should keep in mind because, um, there are important considerations when starting exercise―and this is true for a lot of people who might have sto…

Marfan Basics: Taking Care of Your Aorta 1:02:36-1:06:14 My topic is really focusing on exercise, but I'm also going to mention medications and quality of life. Essentially, these are things that you can do for yourselves on a daily basis …

Cerebrospinal Fluid CSF Leaks in Marfan and Related Conditions 脳脊髄液（CSF）漏出とマルファン症候群に関するウェビナーの要約です。 講演者と背景 スタンフォード大学医学部のCSF漏出頭痛プログラムの責任者であるイアン・キャロル医師が、自身の娘の…

Marfan Basics: Taking Care of Your Aorta 59:00-1:00:01 Q: What are the recommendations for intervention regarding uncomplicated type B aortic dissection in Marfan, what diameter does it need to be open surgery or endovascular work as well.…

Marfan Basics: Taking Care of Your Aorta 56:42-58:39 Another aspect, before pregnancy, if you're thinking about getting pregnant, this is an absolutely important consideration to have. And if you're somewhere in the border, you know there'…

Marfan Basics: Taking Care of Your Aorta 52:51-56:30 The common interventions are typically aortic root replacement, specifically valve-sparing aortic root replacement, which is the most common intervention that we see in patients with inh…

Dural Ectasia in Marfan and Loeys-Dietz Syndrome with Dr. Wouter Schievink 硬膜拡張とは、脳脊髄液を含む硬膜嚢が異常に拡大することです。硬膜は脳と脊髄を覆い、脊髄液を保持する丈夫な膜で、クッションとして機能します。 診断には、MRIスキャンが最…

Marfan Basics: Taking Care of Your Aorta 51:41-52:51 So, when you need surgery, you will see a lot of numbers being thrown around. And you will see these numbers ― you know, these are guidelines, obviously. A lot of this comes from Europea…

Marfan Basics: Taking Care of Your Aorta 49:08-51:41 Now what matters, the institution or the hospital matters, and the surgeon matters. But more importantly, I would say the surgical team, which means the anesthesiologist, the critical ca…

Marfan Basics: Taking Care of Your Aorta 46:54-49:08 So your patient or your loved one needs surgery, and you may have genetically inherited aortopathy or some sort of aortic syndrome. So what are your options, right? And so I'd say first …

Loeys-Dietz Syndrome Frequently Asked Questions ローイス・ディーツ症候群は、多くの情報があり、診断されたばかりの方や支援する方にとっては圧倒されるかもしれません1。財団（Marfan Foundationの一部門としてのLoeys-Dietz Syndrome Foundation）は、…

Marfan Basics: Taking Care of Your Aorta 40:37-43:30 Q: Somebody is asking, what advice would you give a person whose aorta does not yet measure 4.5 cm? Like, how often should they follow up imaging? They obviously want to prevent an emerg…