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。

メンタル

リスクと生きる ~まとめ~

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…

リスクと生きる ~リスクを抱える子供の親へのメッセージ~

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…

リスクと生きる ~リスクの対処法~

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 …

リスクと生きる ~リスクと幸福のバランス~

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…

リスクと生きる ~結合組織疾患とメンタル疾患の併存率~

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 …

発達障害の子どもにマルファンのことを伝えるには

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 …

空間認識能力とは

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…

マルファン関連疾患児の発達障害・行動障害・学習障害 ~背の高さに関する悩み~

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, …

マルファン関連疾患児の発達障害・行動障害・学習障害 ~マルファン症候群の就学児における脳機能研究~

Children with Marfan, Loeys-Dietz, and VEDS: More than Medicine 43:09-45:16 Now as also Alan kind of talked about there's very, very little in the way of studies on a group level looking at Marfan syndrome and so there's one good, there's …

マルファン関連疾患児の発達障害・行動障害・学習障害 ~脳機能と心臓の関係~

Children with Marfan, Loeys-Dietz, and VEDS: More than Medicine 41:01-43:07 So more to the point of why we're here. As I said I work not just in the connective tissue disorder clinic here but also amongst the few cardiac populations and th…

マルファン関連疾患児の発達障害・行動障害・学習障害 ~脳機能検査の具体例~

38:10-40:58 So this is a fairly common task that both kids and adults would get in a neuropsych test. このスライドでは、子ども・成人問わず受ける可能性がある、ごく一般的な脳機能検査を紹介しています。 It's, we give them blocks like this. Tha…

マルファン関連疾患児の発達障害・行動障害・学習障害 ~脳機能検査~

Children with Marfan, Loeys-Dietz, and VEDS: More than Medicine 35:50-37:08 Now process of, if you're not familiar just and you're curious about neuropsych functioning or neuroscience testing we'll just go through it real quick. では、神経…

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 ~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…

術後のメンタルヘルスについて

Open Thoracoabdominal Repair: Surgery Series (2/16/21) 50:10-51:40 Q:What's your experience, somebody's asking about PTSD, grief, depression after this surgery. Now that's less than the mechanical part that you're doing but that's definite…

大動脈手術後の生活についてのオンライン座談会 ~手術前に知っておいてもらいたいこと(医師の解説)~

Personal Perspectives Panel: Life After Aortic Surgery 45:01-46:53 David, is there anything else that you tell your patients ahead of time before they go into surgery? You're on mute. では、David先生、手術前に患者さんに知っておいてもらいた…

大動脈手術後の生活についてのオンライン座談会 ~手術前に知っておいてもらいたいこと(医師の解説)~

Personal Perspectives Panel: Life After Aortic Surgery 45:01-46:53 David, is there anything else that you tell your patients ahead of time before they go into surgery? You're on mute. では、David先生、手術前に患者さんに知っておいてもらいた…

大動脈手術後の生活についてのオンライン座談会 ~画像検査結果が出るまでの不安~

Personal Perspectives Panel: Life After Aortic Surgery 19:07-21:41 Now there's another part of the mental part and Lauren and I were talking about it on the phone yesterday because you still have to watch the rest of your aorta and be moni…

大動脈手術後の生活についてのオンライン座談会 ~術後のメンタルヘルス~

Personal Perspectives Panel: Life After Aortic Surgery 14:29-19:06 You know, so some people asked about the mental, the mental process as well. It's not just physical recovery and also as you move on in your life but, you know, during this…

手術後の不安を解消するにはどうしたらいいか?

Aging with Marfan and Related Conditions (VIrtual Medical Symposium Series, 5/6/19) 44:30-48:01 Q:Here, this is an interesting question and somebody just posted, you know. He's having aorta repair and corrective chest surgery in August at …