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 2019-09-01 to 1 month

マルファン症候群における呼吸器疾患 ~呼吸筋力低下について~

Lung Issues in Marfan Syndrome 8:46-10:09 And we will start with this. So another term for respiratory muscle weakness is the neuromuscular consequences of Marfan syndrome. We know that persons with Marfan syndrome have skeletal muscle wea…

マルファン症候群における呼吸器疾患 ~拘束性肺疾患の原因~

Lung Issues in Marfan Syndrome 8:19-8:45 Now what are the causes of restrictive lung disease in persons with Marfan syndrome? These are the three big causes: scoliosis, pectus deformities, particularly pectus excavatum where you get the de…

マルファン症候群における呼吸器疾患 ~拘束性肺疾患について~

Lung Issues in Marfan Syndrome 6:07-8:18 So let's start with restrictive lung disease. About 50% or more of patients with Marfan syndrome have some degree of restriction and this ranges from relatively mild restriction, which is not someth…

EMPOWERMENT SERIES(オンラインセミナー)について

The Marfan Foundationは、EMPOWERMENT SERIES(オンラインセミナー)を提供しています。このオンラインセミナーでは、マルファン症候群および関連疾患の周辺の問題に関して、専門家が行ったプレゼンテーションがYoutubeで配信されています。 www.marfan.org…

マルファン症候群における呼吸器疾患 ~肺に問題が起きる理由~

Lung Issues in Marfan Syndrome 5:33-6:06 And you may ask, well, "Why are there lung problems in Marfansyndrome?" and that's because the mutant protein in Marfan syndrome, specifically fibrillin-1, is expressed in the lung and it's expresse…

マルファン症候群における呼吸器疾患 ~息切れの原因~

Lung Issues in Marfan Syndrome 3:58-5:32 And so, I start with this triangle because this slide focuses on the most common symptom that patients with Marfan syndrome develop and that can possibly involve the lung and that is shortness of br…

マルファン症候群における呼吸器疾患 ~はじめに~

Lung Issues in Marfan Syndrome セミナー資料: https://info.marfan.org/hubfs/Marfan%20Lung%20Disease%20Webinar%20Final.pdf 3:16-3:58 I first I want to thank everyone who's joining me with this webinar and what I want to do is I want to talk…

将来の整形外科手術はどうなるか?

What techniques may be available for orthopedic surgery in the future? Things happen slower than you would like and progress is very painstaking in orthopedics, especially. 物事というものは思い通りには進まないものですが、特に整形外科の分野…

鳩胸と漏斗胸について

What is a pectus? The pectus is the breast bone of the sternum in medical parlance and normally that is where the ribs attached in the middle. That's where the cardiac surgeon historically would make the cut to open and get into the chest.…

整形外科医は見た目の問題にどう対処するか?

How do you factor in a patient's cosmetic concerns? A lot of patients are a little afraid or embarrassed to bring those concerns to light because they think maybe the doctor thinks you shouldn't talk about those things, but I'm very aware …

整形外科手術からの回復期間はどのくらいか?

What is the recovery period for orthopedic surgery? It takes about three to five days in the hospital on the average to kind of recover to the point where you can manage yourself at home and then after you go home, there's the slower perio…

マルファン患者では整形外科手術が複数回必要か?

Do Marfan syndrome patients usually need more than one orthopedic surgery? Hopefully not. Most Marfan kids don't need a whole lot of orthopaedic operations. そうならないことを願います。マルファン症候群の子供の大部分は、整形外科手術を何度も…

整形外科の手術が必要となる子供の割合は?

What percentage of children need orthopedic surgery? I would say by far most children don't need any orthopedic surgery. We've studied the incidence of spine surgery. It's only about five or maybe ten percent that needs spine surgery at mo…

子供が整形外科手術を受ける時期はどう決める?

How do you know when a child needs orthopedic surgery? I would be a little apprehensive because I know what surgery's like and recovering from it, but I also know that it turns out well in the end and if you can see that goal in the end, y…

整形外科医によるマルファン症候群の診断は?

How is the orthopedist involved in diagnosing Marfan syndrome? I'm very interested in how can you make the diagnosis of Marfan syndrome because knowing about it, then you can take better care of certain things like your heart and your eyes…

マルファン症候群による骨格への影響は?

How does Marfan syndrome affect the skeletal system? Marfan is a defect in fibrillin-1 as Dr. Dietz has shown and that is the elastic that helps to give tissue its own resilience and that affects muscle and ligaments and it even affects bo…

親が子供の良き理解者となるには?

How can parents advocate for their children? Woman A:You need to listen to your physicians, but you also need to question. You can do it nicely. There's many ways, right ways to get the best answers, but you really need to keep going forth…

将来に希望が持てる理由

Why are you hopeful? Man A:I'm hopeful because every year you hear about new advances in the science in the treatment, there are new advances as kids grow, you know, we've seen that the kids over the years who grown up with Marfan and seei…

家族がマルファン症候群とわかったら

What is the emotional impact of the diagnosis on the family? Man A:I do think it's probably a good combination to have somebody who's very emotional and, and, and pushing and somebody who can keep you grounded and, you know, that everythin…

Connective Issues(The Marfan Foundation の機関紙)について

以下からダウンロードできます。 www.marfan.org 重要と思われる記事は翻訳します。

歯科医や矯正歯科医がマルファン症候群の診断に果たすべき役割とは?

What role might dentists or orthodontists play in diagnosing Marfan syndrome? The dental community and the medical community should be aware that the Marfan syndrome certainly has enough facial features even though it has not been as well …

心内膜炎とは?予防法は?

What is endocarditis and how can it be prevented? Endocarditis again being in inflammation of the lining of the heart is something that can be expected or it's a higher risk in someone who has some type of defect in the heart that might ag…

矯正歯科治療は痛い?

Is orthodontic treatment painful? ~0:28(0:29~は違うトピックになっています。編集ミス?) As one would expect, anything that you put in the mouth, it's going to move the teeth such as an expander, is going to cause some discomfort, but it…