January 10, 2016
by marfmom
4 Comments
One of the most difficult parts about having Marfan syndrome or a related disorder is figuring out how to manage activity restrictions. Affected youth (and some adults!) see themselves as invincible. Parents may be inclined to place their children in … Continue reading
September 2, 2015
by marfmom
6 Comments
I’ll admit: I’m picky about doctors. I want someone knowledgeable (or willing to get knowledgeable), friendly, and willing to explain their line of reasoning to me. I’m particularly picky about Marfan doctors. It’s a combo of my being very knowledgeable … Continue reading
June 20, 2014
by marfmom
5 Comments
If your kid wakes up in the middle of the night with a leg cramp, he’s going to want some “blue medicine” (blue raspberry children’s Advil). When you give your kid some blue medicine, he’ll ask for a leg rub. … Continue reading