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.
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:
The Marfan Foundation’s Teen Council is a force to be reckoned with now. And they are clearly our future movers and shakers. This group of teens – who either have Marfan or a related disorder or have a sibling who is affected – is the voice of our adolescent community. Their primary focus is planning for the annual conference each summer; however, plans are underway for even greater involvement throughout the year.
Topics: Marfan Conference
Marfan syndrome is a connective tissue disorder that has effects on the heart, blood vessels, ligaments and bones. The aorta is the main artery that brings blood from the heart and carries blood to the entire body. People with Marfan syndrome and related connective tissue disorders can develop an aneurysm or dilation in the aorta; this can weaken the vessel wall and potentially can lead to a tear in the wall or a dissection. An aortic dissection can have catastrophic effects and it is the leading cause of death in individuals with Marfan syndrome.
Jan Lynch, MSN, RN, joined The Marfan Foundation staff in April as the Director of the Help & Resource Center. Through this blog post, we hope you get to know her a bit more and feel comfortable contacting her by phone or email with your medical questions and concerns.