Entries from 2020-08-01 to 1 month
Children's Heart Issues in Marfan, Loeys Dietz, and vEDS - Virtual Symposium Series (4/9/19) 12:10-14:37 So just some basic cardiac anatomy. This is simple and what most people already know this but I wanted everybody to understand that. …
Children's Heart Issues in Marfan, Loeys Dietz, and vEDS - Virtual Symposium Series (4/9/19) 10:30-12:09 I want to make a point about all of these connective tissue, syndromes. All of these pieces apply but I want to focus right now on two…
Children's Heart Issues in Marfan, Loeys Dietz, and vEDS - Virtual Symposium Series (4/9/19) 9:16-10:29 In terms of vascular Ehlers-Danlos, here's a picture of Dr. Ehlers and Dr. Danlos. This, in contrast, is a syndrome that's caused by mu…
Children's Heart Issues in Marfan, Loeys Dietz, and vEDS - Virtual Symposium Series (4/9/19) 6:43-9:15 Now, although Loeys-Dietz obviously has been around for much longer, it took until 2005 for us to actually recognize the syndrome. It's …
Children's Heart Issues in Marfan, Loeys Dietz, and vEDS - Virtual Symposium Series (4/9/19) 4:40-6:42 So just briefly, Marfan syndrome, probably the most well-known of the connective tissue conditions, recognized as early as 1896 by Frenc…
Children's Heart Issues in Marfan, Loeys Dietz, and vEDS - Virtual Symposium Series (4/9/19) 3:09-4:39 Good evening, everybody! It's a thrill for me to be on this call with all of you. I'm going to talk about heart issues, specifically app…
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…
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…
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…
