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.
We found out my dad had it years later through genetic testing, but he was asymptomatic except for height.
I am now married and have three children of my own; my youngest has Marfan syndrome. I've had three open heart surgeries. Looking back at my life after diagnosis, the one thing I would want to tell to my 15-year-old self is "don't be afraid, don't live in fear." This condition has made me a better person, for sure, but it absolutely does not define me.
I live my life in a way to prove that we can have a somewhat normal life. Follow your doctor’s advice but then live passionately and follow your dreams! Some days are hard, but more days are good. The world is a wonderful place, and life is a beautiful gift. And if anything, this condition gives you a special insight and understanding to these things. You are stronger than you think you are.
This entry is from the essay compilation, Stories from the Heart, created by Sinclaire Schuetze. Thanks to the generosity of Sinclaire and her family, the book of essays will be distributed to each family at the Foundation’s upcoming annual conference (August 3-6, 2017).
If you would like a copy of the book, but are not going to the conference, please email [email protected].