Entries from 2021-09-01 to 1 month
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…
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…
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.…
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…
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…
Pediatric Gastrointestinal Issues in LDS (August 27, 2020) E3 Summit 18:11-18:54 Hi, my name is Anthony Guerrerio. I'll be talking about pediatric gastrointestinal issues in Loeys-Dietz syndrome today. I'm a pediatric gastroenterologist at…
Living a Life with LDS (September 12, 2020) E3 Summit 1:18:18-1:23:47 Q:Just I guess thoughts on ways to manage chronic pain in LDS at different ages and I think particularly as people age and, and start getting into arthritis and things l…
Living a Life with LDS (September 12, 2020) E3 Summit 1:12:50-1:17:01 Q:A couple questions around puberty. One is about, "Are there is, there anything to suspect that a late onset of puberty would be caused or be an effect of LDS?" and the…
Living a Life with LDS (September 12, 2020) E3 Summit 1:09:00-1:12:37 Q:Questions a few of them here about life expectancy. One asking, "Has the life expectancy statistic changed in the last decade and also about lifespan expectancies for …
COVID-19 Questions & Answers - September 2021 はじめに COVID-19の予防および治療に関する最新の研究結果はあるか？ Marfan症候群・Loeys-Dietz症候群・血管型Ehlers-Danlos症候群患者にとって安全性の高いワクチンはどれか？ Marfan症候群・Loeys-Dietz…
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…
2021年2月9日 Janna Klostermann 「お隣はあなたのお母さん？だったら検査受けなきゃダメよ」 カナダのピーターバラにあるコストコで、身長173cmの母を見下ろすようにレジに並んでいた192cmの私は、ある女性に声をかけられました。彼女は、私の足の先から頭…
Living a Life with LDS (September 12, 2020) E3 Summit 59:44-1:03:45 Q:Switching gears here a little bit. How common is dysautonomia in LDS, specifically temperature regulation and heat intolerance? テーマが変わりますが、自律神経障害はLDSで…
Living a Life with LDS (September 12, 2020) E3 Summit 54:42-59:37 Q:So another side of that same coin perhaps is asked how to and maybe we could word this multiple different ways. How do we teach doctors that don't want to learn? Million d…
Living a Life with LDS (September 12, 2020) E3 Summit 50:19-54:38 Q:The next question and I think this is this could probably be taken a little more broadly even. My 22-year-old son was diagnosed with LDS4 one year ago. The only thing he's…
Living a Life with LDS (September 12, 2020) E3 Summit 44:43-49:02 Okay, I think that covers most of the imaging questions that I've seen here. I'm gonna move now. 先ほどのLoeys先生の説明で画像検査についての質問はほぼ網羅されたと思いますの…
Living a Life with LDS (September 12, 2020) E3 Summit 42:06-44:41 Q:About children and how often, how often they should be getting an MRI image being done? Two kids with SMAD3. Is every two years acceptable as I have read how quickly thing…
Living a Life with LDS (September 12, 2020) E3 Summit 37:44-41:52 Q:There are several questions, as is not surprising, about different types of imaging, a lot of imaging questions so I'm just gonna see if I can lump these together and we c…
はじめに デルタ株と結合組織疾患 ブースター接種 マスクによる保護 はじめに The Marfan Foundation の専門家からなる諮問委員会（以下、専門家委員会）は、COVID-19のワクチン接種が望ましいとされる全ての方に、引き続きワクチン接種を推奨します。この中…
Living a Life with LDS (September 12, 2020) E3 Summit 34:00-37:40 Q:Could you talk about craniocervical instability in LDS? Any new HCTD types that have been discovered? What is the usual cause of cerebral, cerebellar tonsillar ectopia or …
Living a Life with LDS (September 12, 2020) E3 Summit 31:29-33:50 Q:Next question, we'll toss to you Dr. Loeys. How often should you get a next, neck flexion x-ray to check for instability? 次の質問はLoeys先生にお願いします。頚椎不安定症を…
Living a Life with LDS (September 12, 2020) E3 Summit 28:31-31:24 Q:Next question wondering if there's any research on having LDS or as well Marfan syndrome and having menopause. I'm curious how losing estrogen affects women's bodies when …
Living a Life with LDS (September 12, 2020) E3 Summit 25:18-28:26 Q:So the first question and I'll let you two decide who, who wants to start here. Perhaps Dr. Dietz, it's your time to your turn to chime in first. では最初の質問です。Loeys…
