Monday, May 14, 2012

Our Marfan Story Begins...Again!

In 1994 my 31 year old husband Daniel was diagnosed with Marfan Syndrome, one year after we were married. He had his aortic valve replaced in 2000 with a St. Jude valve. Because of other medical issues unrelated to Marfan's he could not work any more and has been on disability ever since. His repair has remained stable and he is doing well at age 48.

After many twists and turns of odd symptoms and a misdiagnosis of a related condition, I and several children from an earlier marriage (unrelated to Daniel) were also diagnosed with Marfan's in the fall of 2011.

The odds of having Marfan's is 1 in 5,000. The odds of TWO undiagnosed Marf's meeting and marrying is 1 in who knows how many... Yet, we found each other!!

As we adjust to the diagnosis, our lives are now changed and will be taking a new direction. Follow us along as we see where this uncharted path takes us...

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