What’s in Your LDS Family Tree? Genetics, Variability, Outcomes (September 1, 2020) 1:01:49-1:06:09 So someone is asking your thoughts again on the variability within one type of Loeys-Dietz-like syndrome if you think it's more likely to b…

What’s in Your LDS Family Tree? Genetics, Variability, Outcomes (September 1, 2020) 58:16-1:01:46 So say that there is someone who has an aortic root or ascending aneurysm, there's no known family history, their genetic testing has thus fa…

What’s in Your LDS Family Tree? Genetics, Variability, Outcomes (September 1, 2020) 56:57-58:04 What type, this is kind of a clinical question, but we'll take a detour. Is there any specific type of eye muscle disorder present in LDS, spec…

What’s in Your LDS Family Tree? Genetics, Variability, Outcomes (September 1, 2020) 52:30-55:52 Can the mutation happen anytime in life or is it from birth only? I have a son with LDS2 and a healthy older daughter. My son is de novo so the…

What’s in Your LDS Family Tree? Genetics, Variability, Outcomes (September 1, 2020) 46:47-52:27 This is a tough one. I'm trying to figure out. I don't think it's answerable but what are, what are statistical chances for VUS within TGFBR1 g…

What’s in Your LDS Family Tree? Genetics, Variability, Outcomes (September 1, 2020) 48:25-49:46 For, families that have like multiple generations of Loeys-Dietz syndrome, someone is asking a question that in the third generation it appears…

What’s in Your LDS Family Tree? Genetics, Variability, Outcomes (September 1, 2020) 46:47-48:22 Can a parent with one type of Loeys-Dietz syndrome, perhaps type four, pass down a different type of LDS to their kids? MacCarrick: 親のLDS型と…

What’s in Your LDS Family Tree? Genetics, Variability, Outcomes (September 1, 2020) 42:38-46:43 So just curious Dr. Dietz, your thoughts on like who makes a good candidate for moving forward with whole exome or what kind of family like if …

What’s in Your LDS Family Tree? Genetics, Variability, Outcomes (September 1, 2020) 39:36-42:15 Can siblings be very different in their LDS journey and does being male or female make a marked difference? This person has one person, a male …

What’s in Your LDS Family Tree? Genetics, Variability, Outcomes (September 1, 2020) 38:00-39:34 Is there a way to find out if a family member that has already passed had the gene? We've had some family members that have had similar health …

What’s in Your LDS Family Tree? Genetics, Variability, Outcomes (September 1, 2020) 34:01-37:57 Should relatives who show characteristics of Loeys-Dietz syndrome including aortic dilation yet don't test positive for the family's identified…

Marfan Syndrome Management: Back to Basic 56:44-59:14 How common are is, how common is it for a pediatric patient to require aortic surgery and what does the measurement and should people worry about that? Eileen:お子さんが大動脈手術を受け…

Marfan Syndrome Management: Back to Basic 54:40-56:43 Can we go back to the abdominal aortic aneurysm for a second? How does that affect pregnancy, what would be your recommendation for that if somebody has an aortic aneurysm, an abdominal…

Marfan Syndrome Management: Back to Basic 52:13-53:30 Dr. Malaisrie, are there protocols for aneurysms in the ascending aorta above the root. Is that different from aor, aneurysms at the root? Maisrie先生に質問です。大動脈基部の先にある上…

Marfan Syndrome Management: Back to Basic 50:56-52:11 Dr. Morris, is there any way of knowing how tall a child will be by the time they finish growing? Morris先生に質問です。子どもの成長が止まるまでに身長がどのくらい伸びるか知る方法はあり…

Marfan Syndrome Management: Back to Basic 49:41-50:32 Over to Dr. Malaisrie, typically how long are you in the hospital for aortic surgery if it's prophylactic, you know, and then how long is the recovery after once you go home assuming th…

Marfan Syndrome Management: Back to Basic 47:28-49:41 Dr. Morris, can you discuss the array of genetic testing available for Marfan-related conditions including... Morris先生、マルファン関連疾患の遺伝子検査について教えて下さい。 Sure and i…

Marfan Syndrome Management: Back to Basic 45:16-47:28 Can each of you talk about life, life expectancy, you know, whether somebody's diagnosed early, you know, what, what's the impact on life expectancy from aortic surgery? Question about …

Marfan Syndrome Management: Back to Basic 42:13-45:13 There are several questions about physical activity and Marfan syndrome and Loeys-Dietz, so Dr. Morris, can you just talk about that from, you know, from diagnosis and while you're moni…

Living with Risk 56:30-57:36 Several people are asking about risks after aortic surgery so Juan, do you want to talk about that from the aortic point of view? 大動脈手術後のリスクについてもいくつか質問が寄せられています。Juan先生、大動脈の…

Living with Risk 52:58-56:20 So Karen, there's a question about children seeking therapy to cope with their diagnosis. What's your feeling on that and then Glen, I'd love to know if you've had conversations with any of your families. Karen…

Living with Risk 46:08-51:26 I want to start with one thing that kept coming up in some of the questions that even were submitted the last couple days and this is about the worry about when is an emergency, in emergency. I mean let me tell…

Children with Marfan, Loeys-Dietz, and VEDS: More than Medicine 56:52-1:00:18 What is the most important thing to consider when raising children with Marfan or Loeys-Dietz or vEDS? Marfan症候群やLoeys-Dietzs症候群、血管型Ehlers-Danlos症候…

Children with Marfan, Loeys-Dietz, and VEDS: More than Medicine 51:12-56:46 So I think I have a question, I think this goes along with role modeling that you were talking about, Allan, where like a parent wants to, once, wants to know how …

Children with Marfan, Loeys-Dietz, and VEDS: More than Medicine 49:54-51:12 Mark, can you explain more about the visuospatial versus verbally you talked about? I think people want specific examples of what you mean by visuospatial. Mark先…

Children with Marfan, Loeys-Dietz, and VEDS: More than Medicine 47:22-49:53 So can we just talk a little bit about social development because people want to know, like when, when a child's diagnosed, then they transition into adolescence, …

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 …

Personal Perspectives Panel: Physical Activity & Exercise 46:27-47:42 Thank you for that. Mary, I just want to, I don't want to ask you the same question because Alan kind of answered that but maybe you can adjust more or something that so…

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 …

Pediatric Gastrointestinal Issues in LDS (August 27, 2020) E3 Summit 1:02:16-1:04:22 Q:This is another one specifically from a Marfan patient but I'm going to guess it's got cross, cross applicability again, so he says can severe constipat…