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。

マルファン症候群をはじめから ~内科的治療のまとめ~

Marfan Syndrome Management: Back to Basic 20:24-21:00 So basically in summary, Marfan syndrome is caused by an FBN1 gene variant and causes primarily heart, eye, and skeletal problems. ではまとめです。Marfan症候群はFBN1遺伝子の変異によって…

マルファン症候群をはじめから ~画像検査・薬物治療・予防的大動脈置換~

Marfan Syndrome Management: Back to Basic 16:31-19:13 So what can we do to prevent bad outcomes in Marfan syndrome? How can we manage this, how can, how have we changed the life expectancy from 30 to near normal? では、Marfan症候群で最悪の…

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…

運動に関するオンライン座談会 ~薬の作用~

Personal Perspectives Panel: Physical Activity & Exercise 20:52-21:39 It's important to emphasize also that medications can have a significant impact on physical activity and a lot of times in different ways. 運動に対しては薬も大きな影響を…

下剤について

Pediatric Gastrointestinal Issues in LDS (August 27, 2020) E3 Summit 55:58-58:39 Q:Do you have any concern about long-term use of senna? Do you think magne, Mag O7 could be an effective alternative dosing? 大腸刺激性下剤の長期間服用には問…

LDS小児の消化器疾患 ~便秘と便軟化剤~

Pediatric Gastrointestinal Issues in LDS (August 27, 2020) E3 Summit 28:21-30:42 We're going to shift gears and talk about constipation for a little bit now. では、便秘の話に移りたいと思います。 So for this talk I'm going to use a definiti…

LDS患者におけるARBの適切な服用量について

Living a Life with LDS (September 12, 2020) E3 Summit 1:03:48-1:08:54 Q:Question about losartan. If you can't tolerate a high dose and it might and this person says, "In my case due to low blood pressure will losartan still make a differen…

動脈瘤の拡大を抑えるにはどうしたらいいか?

Open Thoracoabdominal Repair: Surgery Series (2/16/21) 57:29-59:05 Q:So James writes that he has a 3.5 abdominal aneurysm that has grown to this size in the past eight, nine years. Any advice on how to keep the growth under control and he …

大動脈手術後の生活についてのオンライン座談会 ~薬(医師の解説)~

Personal Perspectives Panel: Life After Aortic Surgery 58:58-1:01:07 So David, can you just talk a little bit about why people are taking medication before there's, before and then why they have to continue taking it afterwards? David先生…

大動脈手術後の生活についてのオンライン座談会 ~薬~

Personal Perspectives Panel: Life After Aortic Surgery 57:05-58:56 Let's go on to medications a little bit. So people with Marfan, Loeys-Dietz are what they know they have it, Lauren, are typically taking medications, you know, for their b…

大動脈手術後の生活についてのオンライン座談会 ~手術後の運動(医師の解説)~

Personal Perspectives Panel: Life After Aortic Surgery 21:42-24:39 I want to go to David for the next question. A lot of people asked about going back to exercise after their operation and after recovery or during recovery or what could th…

COVIDワクチン接種後に解熱鎮痛薬を飲んでもいいか?

COVID-19 Update for the Marfan, Loeys-Dietz, and VEDS Community 1:02:37-1:03:34 Q:There's a question here about whether they can take Tylenol or Advil after having a vaccine? COVIDワクチン接種後は、アセトアミノフェンやイブプロフェンを飲ん…

Marfan関連疾患におけるCOVID最新情報 ~アジスロマイシン~

COVID-19 Update for the Marfan, Loeys-Dietz, and VEDS Community 27:04-27:57 You know, we've gone through a lot in terms of therapeutics, haven't we? The whole hydroxychloroquine story was we went full circle and it turned out that hydroxyc…

薬とワクチンが受容体を共有する問題について

Covid and Aortic Conditions: The Latest Research 1:03:20-1:03:50 Q:If some of these medications share receptors with COVID vaccine, does that mean that there are possible issues with the efficacy of the medications and the vaccine? ACE阻害…

プロトンポンプ阻害薬はCOVIDの重症化やワクチンの効果に影響するか?

Covid and Aortic Conditions: The Latest Research 53:21-53:58 Q:Natalia is asking about PPIs. I don't know what that is, so do PPIs have an impact on one's ability to fight COVID infection? I'm not sure if that's pulmonary or heart disease.…

新型コロナウイルス感染症と大動脈疾患についての最新研究 ~治療薬について~

Covid and Aortic Conditions: The Latest Research 37:37-45:16 So let's go on to talk about some of the medications that have now been approved to treat COVID-19 in when you're in the hospital. Kim,do you want to go over some of these?では、…

新型コロナウイルス感染症と大動脈疾患についての最新研究 ~ACE阻害薬・ARBについて~

Covid and Aortic Conditions: The Latest Research 19:07-21:56 So we, we probably just we, we just started to learn about the mechanism of COVID-19. It involved the angiotensin receptor pathway and since many of our patients do take these dr…

新型コロナウイルスワクチンとマルファン関連疾患について

はじめに アレルギーの既往のある患者はどうするか? ARB、βブロッカー、ACE阻害薬と新型コロナウイルスワクチン 新型コロナウイルス拡散に対する注意喚起 はじめに The Marfan Foundation の専門家委員会(PAB)は、接種を認められたすべての集団が、 新型…

血管以外の臓器系へのロサルタンの影響について

CRISPR, Stem Cells, Gene Modifiers – The Future of Marfan Research (August 27 2020) E3 Summit Q:Is there any more research being planned on the effects of losartan on other organ systems? 血管以外の臓器系に対してロサルタンの影響を調べる研…

ロサルタンとドキシサイクリンの併用について

Children's Heart Issues in Marfan, Loeys Dietz, and vEDS - Virtual Symposium Series (4/9/19) 43:38-44:24 Q:What about combining losartan and doxycycline? Um, somebody says they've read that that can reduce the aortic aneurysm size. ロサル…

ARBのリコールについて

Children's Heart Issues in Marfan, Loeys Dietz, and vEDS - Virtual Symposium Series (4/9/19) 42:28-43:34 I mean, I forgot to mention you, you asked me to talk a little bit about the recall on losartan. So as many of you have heard or you k…

ロサルタンの服用を始めるZスコアはどのくらいがいいか?

Children's Heart Issues in Marfan, Loeys Dietz, and vEDS - Virtual Symposium Series (4/9/19) 40:53-42:27 Q:At what z-score would you advise starting losartan? And this particular person says that her son is three years old and the z-score …

マルファン症候群、ロイス・ディーツ症候群、血管型エーラス・ダンロス症候群小児の心疾患について ~フルオロキノロン系抗菌薬についての注意喚起~

Children's Heart Issues in Marfan, Loeys Dietz, and vEDS - Virtual Symposium Series (4/9/19) 37:28-39:00 And then my last thing will be about this FDA warning about fluoroquinolones that you may have heard about. 最後は、ご存じの方もいらっ…

マルファン症候群、ロイス・ディーツ症候群、血管型エーラス・ダンロス症候群小児の心疾患について ~血管型エーラス・ダンロス症候群に対する薬物療法~

Children's Heart Issues in Marfan, Loeys Dietz, and vEDS - Virtual Symposium Series (4/9/19) 31:17-32:19j There's not very much information about medical therapy for patients with vascular EDS. This is a result of a study that was publishe…

マルファン症候群、ロイス・ディーツ症候群、血管型エーラス・ダンロス症候群小児の心疾患について ~βブロッカーとARBの比較試験~

Children's Heart Issues in Marfan, Loeys Dietz, and vEDS - Virtual Symposium Series (4/9/19) 27:24-31:16 And there was some evidence and again I'm coming to skip some of these slides but there's there was some evidence treating some kids w…

マルファン症候群、ロイス・ディーツ症候群、血管型エーラス・ダンロス症候群小児の心疾患について ~マウスモデルでのロサルタンの効果~

Children's Heart Issues in Marfan, Loeys Dietz, and vEDS - Virtual Symposium Series (4/9/19) 26:49-27:23 More recently, a mouse model was introduced showing that Losartan, the other kind of medicine, can rescue the aortic phenotype. 近年マ…

マルファン症候群、ロイス・ディーツ症候群、血管型エーラス・ダンロス症候群小児の心疾患について ~マルファン患者に対するβブロッカーの効果~

Children's Heart Issues in Marfan, Loeys Dietz, and vEDS - Virtual Symposium Series (4/9/19) 26:17-26:48 The big, probably, the biggest study looking at the efficacy of these medicines for people with connective tissue conditions was a tri…

マルファン症候群、ロイス・ディーツ症候群、血管型エーラス・ダンロス症候群小児の心疾患について ~βブロッカーとARB~

Children's Heart Issues in Marfan, Loeys Dietz, and vEDS - Virtual Symposium Series (4/9/19) 25:07-26:16 All right, what about medical therapy? So if there are two basic classes of medications that we use. 薬物療法で用いられる薬は基本的に2…

ACE阻害薬およびARBとCOVID-19について

The Marfan Foundation and Loeys-Dietz Syndrome Foundation Join Forces 34:03-35:58 Q:Now we're gonna jump over to Hal and Bart for the medical question.I'm really into you COVID-19. Vincent says it looks like COVID-19 is also vascular virus…

妊娠中はβブロッカーを飲んだほうがいいのか?

Pregnancy Concerns in Marfan Syndrome and Loeys-Dietz Syndrome 56:54-58:28 Q:What about a woman with Marfan, who doesn't, who doesn't take beta blockers and should she start taking them during pregnancy or any other medication to slow the …