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 2023-03-01 to 1 month

慢性的な下痢について

Loeys-Dietz Gastroenterology and Allergy Q&A 34:39-35:54 Q:How about treatments or medications to identify or alleviate with chronic diarrhea? 慢性的な下痢の原因を調べる方法、対処法を教えてください。 A:I think there again I think a GI work…

栄養チューブは不要になるか?

Loeys-Dietz Gastroenterology and Allergy Q&A 32:43-34:24 Q:When, when it gets to the point that a child would need a feeding tube like ages two or three because of the they're not able to gain weight should they expect to have that tube fo…

体重を増やすにはどうしたらいいか?

Loeys-Dietz Gastroenterology and Allergy Q&A 28:59-32:41 Q:Several questions about sort of like general weight gain I know you touched on that, so if we could expand a little bit on, you know, aside from Miralax, exercise, fiber for kids o…

ロイス・ディーツ症候群に多い腸疾患と内視鏡検査時の注意事項

Loeys-Dietz Gastroenterology and Allergy Q&A 19:00-24:14 Q:Inflammation of the colon, is this common a common part of LDS? What is a solution and then this person is saying, "I've had two scopes, both just showed inflammation", so wonderin…

年齢によるアレルギー症状の変化と抗ヒスタミン薬について

Loeys-Dietz Gastroenterology and Allergy Q&A 17:05-18:53 Q:Can allergies, food allergies specifically, change with time in adults and/or children? We've had a couple questions about that. One specifically citing like had, had an allergy to…

小児科で食物アレルギーの検査をしてくれないのはなぜか?

Loeys-Dietz Gastroenterology and Allergy Q&A 15:05-16:54 Q:This one is about an eczema flare. It says the pediatrician will not run a food panel for allergies, only environmental. Any suggestions? じんましんが出ているのに、小児科では食物ア…

食物不耐症と食物アレルギーの違いについて

Loeys-Dietz Gastroenterology and Allergy Q&A 13:24-14:48 Q:At what point does an intolerance become an allergy? 食物不耐症が食物アレルギーに変わるのはどの時点ですか? A:So they're actually very different things. One doesn't necessarily tur…

ロイス・ディーツ症候群におけるアレルギーと消化器疾患 ~腸脳相関~

Loeys-Dietz Gastroenterology and Allergy Q&A 11:10-11:41 Lastly, there are disorders of gut-brain interaction. This is a newer name, a functional abdominal pain, is a name functional abdominal disorders, irritable bowel syndromes, so these…

ロイス・ディーツ症候群におけるアレルギーと消化器疾患 ~便秘~

Loeys-Dietz Gastroenterology and Allergy Q&A 9:08-11:08 Very frequently in connective tissue disorders such as Loeys-Dietz syndrome you will see constipation very frequently. ロイス・ディーツ症候群のような結合組織疾患では、頻繁に便秘がみら…

ロイス・ディーツ症候群におけるアレルギーと消化器疾患 ~栄養~

Loeys-Dietz Gastroenterology and Allergy Q&A 7:05-9:06 Also in connective tissue disorders and in some people with Loeys-Dietz syndrome they can have weight gain, can be problematic, so this is also seen in Marfan syndrome as well. It can …

ロイス・ディーツ症候群におけるアレルギーと消化器疾患 ~好酸球性食道炎~

Loeys-Dietz Gastroenterology and Allergy Q&A 6:00-7:03 So another kind of food allergy, which is more thought of as a slow motion food allergy, so while this is, while this is a food allergy similar to those that can cause hives or trouble…

ロイス・ディーツ症候群におけるアレルギーと消化器疾患 ~食物アレルギー~

Loeys-Dietz Gastroenterology and Allergy Q&A 3:27-5:58 Almost one-third of people with types one and two LDS will have food allergy. It can be really tricky to diagnose food allergy and distinguish it from food intolerances which are also …

ロイス・ディーツ症候群におけるアレルギーと消化器疾患 ~アトピー性皮膚炎~

Loeys-Dietz Gastroenterology and Allergy Q&A 2:59-3:25 Eczema, which is also known as atopic dermatitis, is also quite common in people with Loeys-Dietz syndrome. This is a chronic skin disease characterized by redness, dryness and as you …

ロイス・ディーツ症候群におけるアレルギーと消化器疾患 ~耳鼻科系アレルギー~

Loeys-Dietz Gastroenterology and Allergy Q&A 0:33-2:58 So several years ago we showed that people with Loeys-Dietz syndrome are more likely to have allergic disease than people in the general population but it's important to note that this…

懸念される大動脈のサイズ変化は?

Aortic Imaging: Your Questions Answered 55:55-56:22 Q:How much change in dimension is too much? 大動脈について、どの程度のサイズ変化であれば大きいと考えられますか? A:So, that my understanding is about three millimeters every year or less.…

シングルマザーの絆

2022年8月11日 私は46歳のシングルマザーで、20歳になる一人息子のジェイコブがいます。成長する過程で常に問題を抱えてきました(とはいえ、自分自身に問題があると思ったことはありません)。二分口蓋垂に可動域の広い関節、漏斗胸、心房細動と上室性頻拍…

心エコーレポートの「圧較差(pressure gradient)」とは何か?

Aortic Imaging: Your Questions Answered 52:04-53:35 Q:Somebody says every time I get an echo and they're post-surgery they have a quote-unquote increased gradient pressure. Can you explain what that is, why, how it affects, what's the effe…

画像検査で大動脈の厚さはわかるか?

Aortic Imaging: Your Questions Answered 50:01-51:59 Q:You know, I had a, we got a couple of questions in advance about looking at the thickness or thinness of the aortic wall, so can you talk about that a little bit like, are you looking a…

強さと共に

2021年11月12日 タミー・アスプルンド 私がロイス・ディーツ症候群1型と診断されたのは、2020年3月、53歳の時です。しかし物語は、入園準備のため息子を小児科に連れて行った2000年から始まります。「カチカチ」という心音を聴いた小児科の医師から、循環器…

心エコー後のCT検査で僧帽弁逸脱の詳細はわかるか?

Aortic Imaging: Your Questions Answered 49:03-49:39 Q:Does CT provide additional information regarding mitral valve prolapse and regurgitation if an echocardiogram has already been done? 心エコー検査後のCTでは、僧帽弁逸脱や僧帽弁閉鎖不全症…

呼吸同期法による心電図MRAの撮影タイミングについて

47:44-48:52 Q:I'm going to ask about gating again just for some clarification. This, this person watching tonight said he recently had an MRA where a belt was wrapped around his midsection to measure his breathing. It seemed as though imag…