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 2022-01-01 to 1 month

手術からの生還

2020年10月22日 Elijah Williams 皆さん、これが私です。上半身の傷跡はマルファン症候群との戦いを繰り広げてきた栄光の証です。 25歳という年齢で幾度となく手術を経験してきました。 Fyfe医師には子供の頃から常に心臓と大動脈の太さを診てもらってきまし…

リスクと生きる ~ARBとβ遮断薬に関する研究~

Living with Risk 7:10-8:08 There is also some other good news in 2020. This was a meta-analysis looking at the use of medications essentially showing that angiotensin receptor blockers like losartan and irbesartan slowed the rate of aortic…

リスクと生きる ~マルファン小児の心血管イベントに関する研究~

Living with Risk 3:56-7:10 As, as Eileen and Michael both mentioned I'm a pediatric cardiologist and I've spent really my career in training with Dr. Denver Sallee and then developed an interest in aortic disease and have been involved in …

マルファン関連疾患の子どもを育てる上で重要なこと

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…

妊娠とマルファン症候群:Russo医師による最新情報

はじめに マルファン女性の出産が身体や健康に及ぼす影響は? マルファン女性の妊娠はハイリスクか? 妊娠中の大動脈解離リスク因子 妊娠前にすべきこと・受診すべき診療科 妊娠中に避けるべき薬 妊娠中に服用してもよい薬 帝王切開を選択すべきか 授乳リス…

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…