When you or a loved one receives a diagnosis of Marfan syndrome or a related disorder, you enter a whole new world. Everyone deals with the diagnosis differently.
Hi my name is Allison. I was diagnosed with Marfan syndrome when I was 15 years old after my older brother had open heart surgery for an aortic root repair. Out of five siblings, four of us have Marfan syndrome.
Topics: Family Planning, Living Successfully, Marfan Community
I was recently reading a book called How to Live a Good Life by Jonathan Fields (which I highly recommend). In one of the chapters, he asks the question:
Topics: Living Successfully, Marfan Community, Quality of Life
