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 year

運動に関する最新研究 ~小児の運動に関する研究(Science in Paris 2022)~

Exercise and Marfan, LDS, and VEDS: The Latest Research 27:26-34:46 OK, Siddharth, that was outstanding, very, very informative and to summarize the animal model studies of genetically programmed Marfan-like mice, aorta's benefit from, fro…

運動に関する最新研究 ~大動脈疾患患者の運動に関する研究のまとめ~

Exercise and Marfan, LDS, and VEDS: The Latest Research 26:05-27:22 And then after they completed the protocol we would survey the individuals about their experience. Half of them said they were more confident in their ability to safely co…

運動に関する最新研究 ~大動脈解離を発症した集団の運動に関する結果~

Exercise and Marfan, LDS, and VEDS: The Latest Research 25:22-26:02 We, we also looked at the aortic dissection subgroup. I mentioned that was a minority of patients but we wanted to make sure that was safe and effective for them. We did n…

運動に関する最新研究 ~大動脈疾患患者の運動に関する研究~

Exercise and Marfan, LDS, and VEDS: The Latest Research 17:48-25:19 So our group has for the last two years studied the safety of exercise for our patients who come to clinic with thoracic aortic disease of all types and we started to do t…

スプーン理論とオンラインコミュニティへの頌歌

2022年12月8日 マディソン・モーリン 慢性疾患によって障害を負った人々は、インターネット上のコミュニティを求め、病気の理解を広める。誰に知られることもなく、心の裡に秘められた経験は、ソーシャルメディアの力で現実世界へと浮上する。 2003年、当時…

運動に関する最新研究 ~マウスモデルでの研究結果~

Exercise and Marfan, LDS, and VEDS: The Latest Research 15:15-17:26 Thank you so much, Alan. That was for that excellent introduction. As, as we mentioned there are, there's some growing body of evidence that exercise is actually not only …

運動に関する最新研究 ~各種ガイドライン~

Exercise and Marfan, LDS, and VEDS: The Latest Research 13:45-15:14 Finally moving on to the guidelines in competition again intense activities for high schools, college and professional athletes competitive sports when you have an underly…

運動に関する最新研究 ~MET(代謝当量)~

Exercise and Marfan, LDS, and VEDS: The Latest Research 12:16-13:44 You can kind of get a sense about the blood pressure and heart response to exercise depending upon the level of exercise. The metabolic equivalent of task or MET is one wa…

運動に関する最新研究 ~血圧と運動の関係~

Exercise and Marfan, LDS, and VEDS: The Latest Research 11:01-12:04 Here's a schematic showing somebody who's doing a jog and you can see the systolic blood pressure, the top number, so at rest is constant. When you have onset of this jog …

運動に関する最新研究 ~運動の分類~

Exercise and Marfan, LDS, and VEDS: The Latest Research 9:07-11:00 And those may differ again depending on what condition one has. Imagine somebody with significant eye features versus somebody with skeletal features, so exercise activity …

運動に関する最新研究 ~運動に関する質問への回答~

Exercise and Marfan, LDS, and VEDS: The Latest Research 8:16-9:06 So here are some of the questions that come up commonly about and, and what I think the simple answer is to say is we don't really have great answers for all these things. I…

運動に関する最新研究 ~血管に関する基礎知識~

Exercise and Marfan, LDS, and VEDS: The Latest Research 6:04-8:15 So as a bit of background this is a cartoon of a blood vessel wall like the aorta or another blood vessel and if, the thin lining layer is called the intima an endothelial c…

運動に関する最新研究 ~トピックの紹介~

Exercise and Marfan, LDS, and VEDS: The Latest Research 3:45-6:02 This is kind of an overview of what we're going to share tonight and we'll try to get through. There's a lot of material, so we'll cover some of it more quickly and try to s…

機械弁でも出産は可能か?

Family Planning and Pregnancy: US and Europe Perspectives 1:05:26-1:07:51 Q: Do you have any women with Marfan who have also received a mechanical heart valve and are on blood thinners carrying a baby to term? You want to take that? Julie …

妊娠・出産について(アメリカ・ヨーロッパの専門医の視点から) ~結合組織疾患女性の妊娠・出産についてのまとめ~

Family Planning and Pregnancy: US and Europe Perspectives 1:02:51-1:03:32 In summary most women with all connective tissue disorders have favorable outcomes in pregnancy, however, the diagnosis prior to pregnancy, proper surveillance, and …

妊娠・出産について(アメリカ・ヨーロッパの専門医の視点から) ~新生児の遺伝子検査~

Family Planning and Pregnancy: US and Europe Perspectives 1:01:15-1:02:49 Now another important thing is that postpartum you have multiple mom and baby so we're going to shift our attention to include the well-being of the child and their …

妊娠・出産について(アメリカ・ヨーロッパの専門医の視点から) ~産後の授乳による大動脈解離リスク~

Family Planning and Pregnancy: US and Europe Perspectives 59:11-1:01:14 But one, one area of risk that has been focused upon is breastfeeding, so oxytocin and is a chemical released endogenously in each person that stimulates both labor an…

妊娠・出産について(アメリカ・ヨーロッパの専門医の視点から) ~産後の画像検査~

Family Planning and Pregnancy: US and Europe Perspectives 57:41-59:10 Overall the majority of aortic complications occur in the third trimester but it's also the postpartum period and that's something we haven't discussed at all yet, so wh…

妊娠・出産について(アメリカ・ヨーロッパの専門医の視点から) ~影響のある脊椎所見~

Family Planning and Pregnancy: US and Europe Perspectives 56:04-57:40 Now cervical instability is another, another spiral manifestation that has an increased risk in Loeys-Dietz syndrome. This can be assessed with an x-ray of the cervical …

妊娠・出産について(アメリカ・ヨーロッパの専門医の視点から) ~硬膜拡張~

Family Planning and Pregnancy: US and Europe Perspectives 54:59-56:03 The spinal anatomy, which differs based on the genetic aortopathy that a person might have, can impact the anesthetic choice and these are a few examples: dural ectasia …

妊娠・出産について(アメリカ・ヨーロッパの専門医の視点から) ~硬膜外麻酔と脊椎麻酔~

53:49-54:58 I wanted to just try to illustrate and, and simplify what we're talking about between these different types of anesthesia, so general anesthesia would generally require intubation and mechanical ventilation but with regional an…

妊娠・出産について(アメリカ・ヨーロッパの専門医の視点から) ~分娩方法~

Family Planning and Pregnancy: US and Europe Perspectives 51:40-53:48 As introduced my name is Mary Shepard and I'm happy to be here to talk with you about delivery and postpartum care. I try to build this chart as a nice summary basically…

妊娠・出産について(アメリカ・ヨーロッパの専門医の視点から) ~妊娠中管理のまとめ~

Family Planning and Pregnancy: US and Europe Perspectives 50:03-50:59 So I came to the to my final recommendations and as we have seen that pregnancy in patients with aortic disease should be managed by a multidisciplinary team and an expe…

妊娠・出産について(アメリカ・ヨーロッパの専門医の視点から) ~ロイス・ディーツ症候群患者の場合~

49:01-50:02 So to conclude I would also make some, some discuss some aspects of pregnancy in patients with Loeys-Dietz syndrome although the data is much scarcer in this group and of course we know that the risk of aortic dissection during…

妊娠・出産について(アメリカ・ヨーロッパの専門医の視点から) ~妊娠中の心血管手術のタイミングに関するメタアナリシス~

Family Planning and Pregnancy: US and Europe Perspectives 47:35-49:00 Of course, the question of the timing has been evaluated a little bit in more detail in this recently published meta-analysis and in this analysis they analyzed 386 pati…

妊娠・出産について(アメリカ・ヨーロッパの専門医の視点から) ~妊娠中の心血管手術~

Family Planning and Pregnancy: US and Europe Perspectives 44:57-47:34 So I will continue with the final part of my presentation and discuss surgery during pregnancy and of course this is something we want to avoid but unfortunately still i…

妊娠・出産について(アメリカ・ヨーロッパの専門医の視点から) ~妊娠中の心エコー・MRI・CT検査~

Family Planning and Pregnancy: US and Europe Perspectives 43:50-44:56 So all our patients with aortic disease should be seen on a regular basis throughout the pregnancy for evaluating the aortic root and echocardiography is the preferred d…

妊娠・出産について(アメリカ・ヨーロッパの専門医の視点から) ~現行のガイドラインによる治療の転帰~

Family Planning and Pregnancy: US and Europe Perspectives 42:24-43:49 So does it pay off? Well, there are a few studies who actually evaluated the safety and the course of pregnancy in patients who are treated according to the current guid…

妊娠・出産について(アメリカ・ヨーロッパの専門医の視点から) ~妊娠中の服薬~

41:21-42:23 So one of the previous speaker already discussed the use of the prophetic use of beta blocks in pregnancy. Well, some studies actually observed a reduced rate of progression of aortic dilatation, so according to the European gu…

妊娠・出産について(アメリカ・ヨーロッパの専門医の視点から) ~妊娠中の画像検査~

Family Planning and Pregnancy: US and Europe Perspectives 39:56-41:20 So patients with aortic pathology should be overseen in specialized centers and supervised by both cardiologists and obstetricians who are actually aware of the potentia…