"Most people don't think of someone like me having a heart condition."
Kristen Miller is one of 200,000 Americans with Marfan Syndrome.
"It's a connective tissue disorder that affects multiple parts of your body. It affects my heart heart and vessels, it affects my eyes it's why I'm so tall and thin. I'm actually 6'2."
Common characteristics of Marfan's. Kristen learned she had it as a child.
"They actually diagnosed both me and my mom at the same time."
It prevented Kristen from competing in sports but otherwise her life was normal. Until ten years ago: The disease claimed Kristen's mother at age 43, causing her aorta to enlarge and then tear.
"From then on I knew that literally it could be any second that something could happen to me."
When Kristen married Jason she started worrying more about her own heart.
She decided to take control and had aortic replacement surgery. But complications nearly killed her.
"I just remember being wheeled into the or and thinking to myself I'm not gonna let this happen. I'm gonna be ok. I'm not gonna let myself die this way."
She spent 62 days in the hospital fighting pneumonia, mrsa, heart failure.
Even had a tracheotomy. But she doesn't regret the surgery.
"Now I feel like I can go somewhere and not worry about how far the hospital is away from me."
And now she and Jason can plan a family. But because she can pass the gene onto a child, they've decided to adopt.
"I cannot wait to be a mom. My mom was my best friend. And I want to be the best friend to our little boy or girl."
There is no cure for Marfan Syndrome, but an early diagnosis and proper treatment can allow people to live a normal life span.