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…

Personal Perspectives Panel: Physical Activity & Exercise 16:31-18:40 Thankfully dying suddenly when you're an athlete is very, very rare so it's a rare phenomenon in general and of that rare complication only two percent of death in athle…

Personal Perspectives Panel: Physical Activity & Exercise 14:45-16:30 What about if I exercise over time? Does it have any impact on my aorta? Next slide. では、長期間にわたって運動を続けた場合はどうなるのでしょうか？大動脈への影響はあるの…

Personal Perspectives Panel: Physical Activity & Exercise 12:45-14:44 I'm going to speak a little bit about a concern that many people have. This is "If I exercise, will that cause harm to my aorta? What do we know about that?" Well, next …

Personal Perspectives Panel: Physical Activity & Exercise 10:55-12:39 In general systolic blood pressure may increase by eight to twelve millimeters of mercury per MET of aerobic activity. Since blood pressure directly impacts aortic wall …

Personal Perspectives Panel: Physical Activity & Exercise 8:38-9:59 Although we often talk about exercise as a general category it's really important to emphasize that not all types of exercise are the same. Certain activities lead to more…

Personal Perspectives Panel: Physical Activity & Exercise 7:33-8:21 And then the aorta is different in everyone. On the slide to your left, next slide, will have an arrow pointing to the aorta in someone that looks normal so that's a norma…

Personal Perspectives Panel: Physical Activity & Exercise 6:45-7:30 In some people it's not just the blood pressure response or the aorta that we think about but of course risks to other other parts of the body that can be involved. 運動に…

Personal Perspectives Panel: Physical Activity & Exercise 5:30-6:43 People ask about a heart rate during exercise. That's really kind of tricky because everybody's heart rate starts at a different level especially if you're on medication y…

Personal Perspectives Panel: Physical Activity & Exercise 3:46-5:29 So what do we know about exercise? How much is safe? It really depends, what's the condition, what's the condition of the aorta, what's the age of the individual, what typ…

Personal Perspectives Panel: Physical Activity & Exercise 2:20-3:41 Welcome and it's a privilege to be here with everybody today as Eileen said Mary and I are gonna tag team and really just give some basic information and kind of a broad o…

Pediatric Gastrointestinal Issues in LDS (August 27, 2020) E3 Summit 1:02:16-1:04:22 Q:This is another one specifically from a Marfan patient but I'm going to guess it's got cross, cross applicability again, so he says can severe constipat…

Pediatric Gastrointestinal Issues in LDS (August 27, 2020) E3 Summit 58:43-1:01:09 Q:Could you speak to the effects of connect, connective tissue disorders on the pelvic floor? This person specifically asked about Marfan but maybe broadly …

Pediatric Gastrointestinal Issues in LDS (August 27, 2020) E3 Summit 55:58-58:39 Q:Do you have any concern about long-term use of senna? Do you think magne, Mag O7 could be an effective alternative dosing? 大腸刺激性下剤の長期間服用には問…

Pediatric Gastrointestinal Issues in LDS (August 27, 2020) E3 Summit 54:23-55:49 Q:Are there any new treatments for, I'm just gonna go ahead and use the abbreviation EoE so I don't butcher the, the words here, except diet, steroids, and PP…

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…