Q & A
What You and Your Healthcare Professionals Should Know About Marfan Syndrome - Webinar 1:02:27-1:03:18 Q: What evidence is there to implement an endoprosthesis in a descending aortic aneurysm in Marfan? Q: マルファン症候群における下行大動…
What You and Your Healthcare Professionals Should Know About Marfan Syndrome - Webinar 1:05:11-1:06:39 Q: How can we educate young adults with Marfan syndrome in a way that is not depressing or overly scary? Q: 若者世代のマルファン症候群の…
What You and Your Healthcare Professionals Should Know About Marfan Syndrome - Webinar 1:04:21-1:05:08 Q: What are the protocols for someone with Marfan who is unconscious? Is it okay to start CPR? Q: 意識不明のマルファン症候群患者に対する…
What You and Your Healthcare Professionals Should Know About Marfan Syndrome - Webinar 1:03:19-1:04:19 Q: What issues are being seen in people over the age of 70 with Marfan syndrome? Q: 70歳を超えたマルファン症候群の患者さんでは、どのよう…
What You and Your Healthcare Professionals Should Know About Marfan Syndrome - Webinar 1:01:18-1:02:25 Q: What are the restrictions around weightlifting for people with Marfan syndrome? Q: マルファン症候群の患者さんが重いものを持ち上げる場…
What You and Your Healthcare Professionals Should Know About Marfan Syndrome - Webinar 59:18-1:00:19 Q: My grandson was diagnosed at age 10 due to an ascending aortic aneurysm, even though genetic testing did not show the known variants. H…
What You and Your Healthcare Professionals Should Know About Marfan Syndrome - Webinar 57:41-59:14 Q: My son is currently at 4.5. We have been told repeatedly not to wait until 5.0 to start the surgery process. We would like to be proactiv…
What You and Your Healthcare Professionals Should Know About Marfan Syndrome - Webinar 56:47-57:39 Q: If my sibling has a confirmed genetic diagnosis for Marfan, do I also need to get genetic testing? My father and I were both diagnosed by…
What You and Your Healthcare Professionals Should Know About Marfan Syndrome - Webinar 55:23-56:44 Q: Is there a best beta-blocker for individuals with Marfan syndrome? Should they go the cardio-selective route? What’s the best approach th…
What You and Your Healthcare Professionals Should Know About Marfan Syndrome - Webinar 53:53-54:49 Q: My daughter is four and has only had two echoes. Does she also need a CT? Q: 娘は4歳ですが、心エコー検査を2回しか受けていません。CT検査も…
Staying Healthy & Exercising Safely 44:56-46:03 Q: Someone’s asking whether Pilates, previously recommended exercises for those with connective tissue conditions, is still advisable in light of the work you’ve done? ピラティスは以前、結合…
Staying Healthy & Exercising Safely 43:27-44:47 Q: Should folks monitor heart rate during exercise, and are there general goal recommendations? 運動中に心拍数を測る場合、一般的な目標値はありますか？ A: That’s a great point, and a lot of pe…
Staying Healthy & Exercising Safely 42:13-43:24 Q: Someone is sharing that they're having a difficult time getting family and friends to understand what they can and can't do from a physical activity perspective. It makes them not want to …
Staying Healthy & Exercising Safely 40:29-42:07 Q: Someone wrote in saying that they are a year and a half post-dissection and always tired. They try to walk 30 minutes a day, but they see others post-dissection who are able to do more, an…
Staying Healthy & Exercising Safely 37:48-39:04 Q: For someone whose 15-year-old son does not have any cardiac issues―it does not specify their actual diagnosis― would it be okay to play a sport like volleyball? 15歳の息子さんをお持ちの親…
Staying Healthy & Exercising Safely 36:25-37:46 Q: For someone with VEDS and POTS, it's very hard to exercise with both conditions. Do you have recommendations on activities that might work? VEDSとPOTS（体位性頻脈症候群）の両方をお持ちの患…
Staying Healthy & Exercising Safely 34:56-36:22 Q: There are lots of questions around specific exercises. If you're willing, I'll try. Okay, the first one: for individuals with VEDS, are abdominal movement-based exercises like crunches, mo…
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…
marfan.org 上記サイトから英語で質問する際のテンプレート例です。英訳は生成AIを使うことをお勧めします。 Subject: Inquiry from Japan regarding [Marfan syndrome / aortic disease / your condition] Question: Dear Help Center Team, My name is [Yo…
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 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.…
LDS患者はCPR（心肺蘇生法）を受けるべきでしょうか？CPRが推奨されないような状況はありますか？ LDSは「活動停止中」だと言われました。どういう意味ですか？ 表現型と遺伝子型についてですが、目立った外見的な特徴がない場合でも、LDSのことを心配しなけ…
結合組織疾患における全般的な消化器の懸念 結合組織疾患患者で最も一般的な消化器の問題とは？ 診断と治療法 専門医にかかるべきタイミング、サイン、専門知識のある医師や医療機関を受診することの重要性について 標準的な消化器の薬（例 プロトンポンプ阻…
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…
Marfan Basics: Taking Care of Your Aorta 21:12-23:02 Q: Somebody's asking me if you could just briefly clarify again the difference between a dissection and an aneurysm, so like for example like, you know, this person's doctor said that he…
Managing HTAD: Key Insights from the 2024 ESC Guidelines 1:07:34-1:10:43 Q: Is the use of ARBs recommended in Marfan patients whose blood pressure is normal to low and this person has a abdominal aneurysm which is followed annually and the…
Managing HTAD: Key Insights from the 2024 ESC Guidelines 1:05:34-1:07:24 Q: What’s the difference between a Type B and a Type A dissection and how is it related to pregnancy? A型解離とB型解離の違いについて教えてください。また、妊娠との関係…
Managing HTAD: Key Insights from the 2024 ESC Guidelines 1:03:09-1:05:28 Q: Are there side effects that come from losartan? Julie? ロサルタンの副作用はありますか？ A: Yeah, I can go on. Side effects from the main... the main concern is tha…
Managing HTAD: Key Insights from the 2024 ESC Guidelines 59:57-1:03:02 Q: There is a question here about Celiprolol not being available in the United States, but currently, you can go into a trial with Celiprolol within the United States. …
Managing HTAD: Key Insights from the 2024 ESC Guidelines 57:36-59:55 Q: This family has genetic testing and they are in the VUS category, but they have been affected by aortic aneurysm for three generations, having, aortic aneurysm repair …
