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…

Living with Risk 44:21-45:38 And these last few thoughts I have them listed as considerations for kids but honestly they're really appropriate for all of us. Learning and practicing different calming and relaxation skills, facilitating con…

Living with Risk 41:54-44:18 All right, so I'm gonna try to go through these pretty quickly and we can save a little time for it in the Q&A but a few thoughts that I have on considerations for supporting our little people in coping with th…

Living with Risk 38:14-41:51 So just a couple notes on strategies for coping with risk. First and foremost, we, we need to be looking for opportunities for support and validation. We need to find that in our families and friend groups and …

Living with Risk 34:55-38:12 All right, so tonight's presentation is all about talking about risk and the impact that risk has on our emotional health and I want to really name that our awareness of risk although it can negatively impact o…

Living with Risk 32:54-34:52 So I'm gonna talk a little bit about the emotional impact of living with chronic risk and I'm going to try to fly through this. I feel like this is a huge topic to try to cover in a short period of time so I'm …

Living with Risk 30:18-30:56 Now this is again, I'm not going to say too much. Dr. lunuchi covered this very well. I agree with him. I, I, I tell patients that they can do physical activity as long as they can talk in a complete sense whil…

Living with Risk 28:32-30:17 Here's a patient who has vEDS and Loeys-Dietz, VUS. So this is a not exactly a disease-causing mutation has had a pneumothorax and so what imaging does this person need. vEDSとLoeys-Dietz症候群両方の遺伝子検査…

Living with Risk 25:40-28:31 Now what about aneurysms in other locations and what about the timing of surgery? 動脈瘤ができる場所と手術タイミングについての質問です。 This is a complicated slide and but just the main point here is this. So …

Living with Risk 23:53-25:39 So then, there's another question. "What advice can you offer for sharing new diagnostic, diagnostic information with other family members who have not been tested but may be similarly affected..." 「遺伝子検査…

Living with Risk 21:57-23:09 So now here are some questions from participants in today's session. では、本日の参加者の方から寄せられた質問に回答していきたいと思います。 So "Following a valve-sparing procedure, how likely is it to develop o…

Living with Risk 20:24-21:56 This is just a slide showing life expectancy from 1770 to 2019 and you can see that in the last hundred years or so it really picked up around the world. こちらのスライドは1770年から2019年における平均余命を示し…

Living with Risk 18:04-19:25 And I would say that the exact disease and the exact diagnosis matter tremendously so there are certainly some conditions that we know are going to be higher risk. 正確な診断がつくということは非常に大事なことで…

Living with Risk 15:33-18:03 And we do know that aortic dissection is a rare event. The IRAD registry data note that this occurs in about two to three per 100,000 people and this was a majority male and majority older crowd. 大動脈解離が稀…

2022年1月13日 Monica Newnam このお話は、ほぼ私の夫に関するものです。マルファン患者は夫ですが、その影響は夫だけにとどまりません。 マルファン症候群のことを初めて知ったのは2012年のことでした。当時、若くてハンサムなパイロットとお付き合いを始め…

Living with Risk 13:00-15:33 But maybe exercise isn't as risky as we think. So in 2017 there were two papers that were published that looked at the effect of moderate exercise on Marfan mice and both of these showed improvement in cardiac …

Living with Risk 10:39-12:58 Currently there are guidelines that help us with Marfan syndrome in terms of what activities might be safe.They are based on adult exercise stress test data that look at metabolic equivalence and which is not s…

Living with Risk 8:10-10:38 One of the questions that comes up really frequently when we're thinking about taking care of patients with aortic disease is living with risk. How do we do that? And one of the things that really comes up for a…