September 26, 2016
by marfmom
1 Comment
I’m excited to share a post from one of my former teen council members, Delaney. Delaney has Ehlers-Danlos syndrome and is a force to be reckoned with. As cliché as it sounds, Ehlers-Danlos syndrome is like a box of chocolates. … Continue reading
June 25, 2013
by marfmom
0 comments
I’m on vacation at the beach(!), so while I’m lazing about my days getting a tan, a couple of readers have submitted guest posts. Today’s is written by Rhiannen, about her journey to find an accurate diagnosis. She blogs at … Continue reading
March 1, 2010
by marfmom
10 Comments
Many of us have felt the anxiety of trying to find a new doctor, and the frustration of having to “train” a doctor if a Marfan specialist can’t be found. Today’s post is going to be focused on the types … Continue reading