ロイス・ディーツ症候群（LDS）
Children with Marfan, Loeys-Dietz, and VEDS: More than Medicine 56:52-1:00:18 What is the most important thing to consider when raising children with Marfan or Loeys-Dietz or vEDS? Marfan症候群やLoeys-Dietzs症候群、血管型Ehlers-Danlos症候…
Children with Marfan, Loeys-Dietz, and VEDS: More than Medicine 17:55-19:24 Well, what about vEDS and LDS? You know, of course, this is a condition, these conditions are much less prevalent than Marfans, I think it's probably 25 to 50 perc…
2021年8月18日 Mehmet Tascioglu 2010年の清々しいある日のこと。パム・モウルトラップさんは病院の受付で書類の記入を済ませると、献身的な最愛の夫であるゲイリー氏とともに診察室へと向かいました。膝の手術を控えていた彼女は、術前に主治医の診察を受け…
Personal Perspectives Panel: Physical Activity & Exercise 28:09-30:01 Thanks so much. Definitely have some questions for you. I'm gonna toss it over to Samantha now so if you tell us a little bit about your story and what, you know, physic…
Personal Perspectives Panel: Physical Activity & Exercise 18:49-20:51 So looking at the best data that we have available what do the guidelines recommend regarding competitive sports in people with Marfan syndrome and related disorders? Ma…
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 …
Pediatric Gastrointestinal Issues in LDS (August 27, 2020) E3 Summit 49:50-51:33 Q:Next question my son with Loeys-Dietz gets sick or vomits at least a couple times a week. Should he be seeing a gastroenterologist or is this common? LDSの…
Pediatric Gastrointestinal Issues in LDS (August 27, 2020) E3 Summit 48:13-49:35 Q:What are the main things to look out for and should test to look for this be carried out on everyone with Loeys-Dietz or just those with symptoms? We have a…
Pediatric Gastrointestinal Issues in LDS (August 27, 2020) E3 Summit 46:18-48:01 Q:Next question is taking Miralax daily twice a day okay and does it cause malnutrition and/or low potassium? ミララックスを毎日2回服用しても問題ないでしょう…
42:31-46:07 Q:It says is there a specific allergy common in Loeys-Dietz syndrome? My partner is dairy and lactose intolerant so should we consider an allergy test for our old 14-year old, 14 month- old son, LDS SMAD3? LDSで多くみられるアレ…
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…
Pediatric Gastrointestinal Issues in LDS (August 27, 2020) E3 Summit 37:51-38:54 Symptoms of inflammatory bowel disease include poor growth, diarrhea, blood in the stool and blood tests that show hidden inflammation, anemia or low red bloo…
Pediatric Gastrointestinal Issues in LDS (August 27, 2020) E3 Summit 35:53-37:48 What I'm going to be spending some more time I'm talking about is another form of intestinal inflammation called inflammatory bowel disease or IBD. 次に炎症性…
Pediatric Gastrointestinal Issues in LDS (August 27, 2020) E3 Summit 34:46-38:54 Lastly I'm going to talk about intestinal inflammation in Loeys-Dietz syndrome. 最後はLDSにおける炎症性腸疾患についてお話します。 The first kind of intestinal…
Pediatric Gastrointestinal Issues in LDS (August 27, 2020) E3 Summit 32:41-34:44 Other things to consider if you're not responding as expected to a daily stool softener and or a stimulant is additional testing. 便軟化剤や刺激薬を毎日服用し…
Pediatric Gastrointestinal Issues in LDS (August 27, 2020) E3 Summit 30:44-32:39 With long-term constipation we can see some other issues. 長期間続く便秘に関しては他にもいくつかの問題があります。 So having a bowel movement requires coordin…
Pediatric Gastrointestinal Issues in LDS (August 27, 2020) E3 Summit 28:21-30:42 We're going to shift gears and talk about constipation for a little bit now. では、便秘の話に移りたいと思います。 So for this talk I'm going to use a definiti…
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 …
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…
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…
