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。

栄養

LDSガイドラインの改訂に向けて ~消化器疾患とがんの発症リスク~

LDS Guidelines: Then vs. Now 46:57-50:15 Same thing for gastroenterology and nutrition for Loeys-Dietz syndrome. We do follow the growth of our patients, especially our young kiddos very closely, especially if someone is looking at a surge…

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…

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 …

LDSでBMIが低い状態が続いている場合はどうするか?

Pediatric Gastrointestinal Issues in LDS (August 27, 2020) E3 Summit 51:47-54:19 Q:What are the main nutritional concerns with a consistently low BMI for LDS children? My 15-year-old has struggled with weight gain and his type Loeys-Dietz …

LDS小児の消化器疾患 ~まとめ~

Pediatric Gastrointestinal Issues in LDS (August 27, 2020) E3 Summit 38:55-40:30 So to summarize your body mass index or if you're less than two your weight for length should be plotted at every visit and if it is low dropping or a surgery…

LDS小児の消化器疾患 ~ビタミンDとカルシウム~

Pediatric Gastrointestinal Issues in LDS (August 27, 2020) E3 Summit 27:08-28:18 Just to focus on a few more aspects of the nutritional considerations. We know that the bones of people with Loeys-Dietz syndrome are weaker. We want to be su…

LDS小児の消化器疾患 ~経鼻胃チューブ・胃ろうチューブ~

Pediatric Gastrointestinal Issues in LDS (August 27, 2020) E3 Summit 24:26-27:06 So sometimes however people just aren't able to eat and or drink enough, sometimes dietary exclusions due to allergies make that difficulty. People with Loeys…

LDS小児の消化器疾患 ~フォーミュラ(調製粉乳)~

Pediatric Gastrointestinal Issues in LDS (August 27, 2020) E3 Summit 22:00-23:15 Sometimes calorie packing is not the best way to proceed with some patients and so in those cases we may use formulas. Formulas exist in many different forms.…

LDS小児の消化器疾患 ~栄養療法~

Pediatric Gastrointestinal Issues in LDS (August 27, 2020) E3 Summit 20:19-21:58 So if your body mass index is dropping percentiles if you're crossing lower in the graph, if you're consistently below the third percentile, if you're below t…

LDS小児の消化器疾患 ~BMI~

Pediatric Gastrointestinal Issues in LDS (August 27, 2020) E3 Summit 18:35-28:20 First talking about some nutritional considerations, so growth with, growth is frequently impaired in people with Loeys-Dietz syndrome. まず、栄養に関する側面…

大動脈手術後の生活についてのオンライン座談会 ~手術後の食事・栄養~

Personal Perspectives Panel: Life After Aortic Surgery 53:33-55:50 A lot of people also asked about, about diet and nutrition, so I'm curious who on here might be have had to change their diet maybe because of warfarin and oh, what they th…

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 ~その他の高リスク疾患について~

Covid and Aortic Conditions: The Latest Research 16:19-18:59 You know, several of our other genetic aortic conditions do have other issues that may put them at a higher risk. So Enid, do you want to go over that? I think some of these are …

栄養・体重・QOLについて ~パート3~

2016年4月25日Hien Nguyen-Le 先日このマルファンブログで、Alix McLean Jenningsさんが栄養士の先生と協力して、9歳になるマルファン症候群の娘Cassieちゃんの体重を健康的なレベルまで増加させたお話をご紹介しました。前回のブログでは、Aixさんと栄養士…

栄養・体重・QOLについて ~パート2~

2016年4月7日Hien Nguyen-Le 先日このマルファンブログで、Alix McLean Jenningsさんが栄養士の先生と協力して、9歳になるマルファン症候群の娘Cassieちゃんの体重を健康的なレベルまで増加させたお話をご紹介しました。今回のブログでは、Aixさんと栄養士の…

栄養・体重・QOLについて ~パート1~

2016年5月22日Alix McLean Jennings 私達マルファン症候群の家族にも関わりの深いQOL(生活の質)の問題に対するThe Marfan Foundationの取り組みには、とてもワクワクしています。9歳になるマルファンの娘の母親として、現在そして将来の娘のQOLについて日…