Living with Marfan's Syndrome

Last February 03, 2018 I joined a Marfan Volunteered Planning Meeting at Stanford University here in California. This event was in preparation for their up-coming National Marfan Conference on July 12 – 15, 2018 That experience was really wonderful, I got the chance to meet again other people with marfan syndrome, (even had photos with some of them). During that meeting, they mentioned the possible topics that will be discuss during the upcoming Conference and at the same time they encourage people to do volunteer during the event. Their possible topics during this conference are the following: (targeting medical issues/led by professionals) Osteoporosis Feet Aortic disease Pain management Gastro specialist Eyes (at least two maybe 3 sessions) Back Related issues (Loeyes-Dietz and “other related”) Feet Gyn focused on women’s issues Ob focused on Marf pregnancy Genetics/research Dural ectasia/CSF leaks/spinal headache