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。

Entries from 2021-01-01 to 1 year

マルファン症候群生徒のための学校向けガイドライン

1. はじめに マルファン症候群とは? マルファン症候群の特徴は? マルファン症候群の原因は? マルファン症候群の発症率 マルファン症候群の診断 マルファン症候群患者の人生 マルファン症候群において緊急を要する疾患 マルファン症候群の類縁疾患 2. マル…

マルファン関連疾患児の発達障害・行動障害・学習障害 ~脳機能の評価項目~

Children with Marfan, Loeys-Dietz, and VEDS: More than Medicine 34:43-35:48 So yeah, just real quickly kind of going through the domains of what is assessed in general and any, ideally in any neuropsych function. It won't necessarily be al…

マルファン関連疾患児の発達障害・行動障害・学習障害 ~神経心理学とは~

Children with Marfan, Loeys-Dietz, and VEDS: More than Medicine 32:51-34:42 Now really kind of what do, I do and what is neuropsychology. I suspect if you ask my family and a lot of my friends they really wouldn't have an idea of what I do…

マルファン関連疾患児の発達障害・行動障害・学習障害 ~ストア哲学~

Children with Marfan, Loeys-Dietz, and VEDS: More than Medicine 29:03-32:50 So, I'm Mark Beidelman. As we kind of mentioned before my quick, just a quick little thing about my background because I will be probably talking about this a litt…

マルファン関連疾患児の発達障害・行動障害・学習障害 ~メンタル疾患の治療に関するアドバイス~

Children with Marfan, Loeys-Dietz, and VEDS: More than Medicine 27:50-28:45 So last two slides I would say when you're thinking about intervention in particular don't get discouraged as the first thing that you try is not working because s…

マルファン関連疾患児の発達障害・行動障害・学習障害 ~ストレスへの対処法~

Children with Marfan, Loeys-Dietz, and VEDS: More than Medicine 24:05-27:49 All right, so what can you do? Here's, this is just kind of an outline and again in the Q&A we will get into more details. ではストレスへの対処法についてお話したい…

マルファン関連疾患児の発達障害・行動障害・学習障害 ~結合組織疾患とパンデミックに共通するメンタル疾患~

Children with Marfan, Loeys-Dietz, and VEDS: More than Medicine 22:48-24:03 The potential mental health issues of both the primary connective tissue disorder as well as pandemic that we see commonly in our patients include anxiety, depress…

マルファン関連疾患児の発達障害・行動障害・学習障害 ~ストレスの原因~

Children with Marfan, Loeys-Dietz, and VEDS: More than Medicine 19:44-22:46 Okay so, I promised we would get to this medical associated stressors. This is, this is a big issue as, as you folks know in our population. では、お約束していたよ…

マルファン関連疾患児の発達障害・行動障害・学習障害 ~vEDS、LDSの所見~

Children with Marfan, Loeys-Dietz, and VEDS: More than Medicine 17:55-19:24 Well, what about vEDS and LDS? You know, of course, this is a condition, these conditions are much less prevalent than Marfans, I think it's probably 25 to 50 perc…

マルファン関連疾患児の発達障害・行動障害・学習障害 ~精神医学的研究におけるハードル~

Children with Marfan, Loeys-Dietz, and VEDS: More than Medicine 15:09-17:53 So does Marfan syndrome increase risk for neuropsychiatric or learning disorders? I don't know. I have absolutely no definitive idea at this point but we can answe…

マルファン関連疾患児の発達障害・行動障害・学習障害 ~遺伝子変異による脳へのリスク~

Children with Marfan, Loeys-Dietz, and VEDS: More than Medicine 12:03-15:06 Let's get to it now. In terms of connective tissue disorder so is there genetic risk for brain effects in Marfan syndrome? では結合組織疾患、特にMarfan症候群では遺…

マルファン関連疾患児の発達障害・行動障害・学習障害 ~精神疾患の診断~

Personal Perspectives Panel: Physical Activity & Exercise 10:51-12:02 Okay, some of you may have heard about DSM disorders or ICD-10, DSM-5 disorders. This is diagnostic and statistical manual. This is what people in the field use to make …

マルファン関連疾患児の発達障害・行動障害・学習障害 ~遺伝子と環境~

Children with Marfan, Loeys-Dietz, and VEDS: More than Medicine 8:10-10:50 Okay, so along those lines let's talk about some important concepts about genes, environment and what we call G x E or that's genes by environment interaction. では…

マルファン関連疾患児の発達障害・行動障害・学習障害 ~はじめに~

Children with Marfan, Loeys-Dietz, and VEDS: More than Medicine 6:32-8:09 Okay, so it's, it's a pleasure to be here and be able to talk to the folks who have registered for this webinar about what the current state of the knowledge is with…

28歳マルファン男性の経験談

Personal Perspectives Panel: Physical Activity & Exercise 58:50-1:01:58 So do you, I mean, obviously the heart and aortic issues are the biggest concerns but, you know, they also talked about, we have our physical activity guidelines, whic…

結合組織疾患でも筋肉は付くか?

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 …

ウェートを使った運動からエクササイズバンドを使った運動へ

Personal Perspectives Panel: Physical Activity & Exercise 54:37-56:31 So I'm going to go over to Alan Tucker now. I mean, Samantha, we left Samantha off. Samantha was talking a little bit about knowing her body. Somebody is asking, Alan, y…

夫婦の絆 病気を乗り越え支援へつなげる

2021年8月18日 Mehmet Tascioglu 2010年の清々しいある日のこと。パム・モウルトラップさんは病院の受付で書類の記入を済ませると、献身的な最愛の夫であるゲイリー氏とともに診察室へと向かいました。膝の手術を控えていた彼女は、術前に主治医の診察を受け…

運動としての性行為

Personal Perspectives Panel: Physical Activity & Exercise 53:50-54:28 The, the one question somebody did ask just about intimacy so I didn't. Before I end I will say that we, we do address this in in our writings. 性行為に関する質問もいた…

水泳のトレーニングで気を付けたこと

Personal Perspectives Panel: Physical Activity & Exercise 51:18-53:09 Samantha, people want to know about your about your swim workouts and how did that change when you were diagnosed? 水泳のトレーニングについて、サマンサさんに質問が寄せら…

子どもの運動についての母親の考え

Personal Perspectives Panel: Physical Activity & Exercise 47:43-51:18 Morgan, can you just build on that? You know, do you, what does your son do in PE class and do you feel like he's getting enough exercise outside of school and maybe tal…

マルファン症候群の診断

はじめに マルファン症候群とは? マルファン症候群の原因は? マルファン症候群の遺伝経路 マルファン症候群の特徴は? 心臓・血管 骨・関節 眼 その他の所見 マルファン症候群が疑われる場合はどうすべきか? マルファン症候群の診断法は? 遺伝子検査を検…

体育の授業について

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…

運動に関するオンライン座談会 ~医師による質問への回答~

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 …

運動に関するオンライン座談会 ~運動に対するアドバイス~

Personal Perspectives Panel: Physical Activity & Exercise 43:01-44:11 So I think that just hearing how healthy the choices that you guys made, I mean, and it's such great advice but it takes time to get to that and just like Morgan's son i…

運動に関するオンライン座談会 ~Braverman医師の兄~

Personal Perspectives Panel: Physical Activity & Exercise 41:27-43:00 Thank you so much. I do have questions for each of you but I want to kind of take this question to our two doctors. パネリストの皆さん、ありがとうございました。いくつか…

運動に関するオンライン座談会 ~パネリスト③(12歳男児 血管型エーラス・ダンロス症候群 の母親)のお話~

Personal Perspectives Panel: Physical Activity & Exercise 37:29-41:26 Morgan, as a parent I know a lot of, a lot of parents want to protect their kids and also direct them and then at the same time they're athletes like you are and, you kn…

運動に関するオンライン座談会 ~パネリスト②(29歳女性 ロイス・ディーツ症候群)のお話~

Personal Perspectives Panel: Physical Activity & Exercise 36:02-37:25 Samantha, you want to talk about the mental aspect a little bit? サマンサさんは、スポーツからどのような精神的影響を受けましたか? Yeah, so when I had to make a lot of my…

運動に関するオンライン座談会 ~パネリスト①(28歳男性 マルファン症候群)のお話~

Personal Perspectives Panel: Physical Activity & Exercise 31:46-36:01 Yeah, so I just wanted to kind of start the discussion off with a little bit about like your attitude about exercise and fearing, figuring out what's right for you becau…

運動に関するオンライン座談会 ~パネリスト③ 12歳男児(血管型エーラス・ダンロス症候群)の母親~

Personal Perspectives Panel: Physical Activity & Exercise 30:07-31:44 We have another perspective now and this is Morgan's perspective as a parent of a, of a son with more with, with vEDS so go ahead, Morgan. 最後はモーガンさんです。モーガ…