Monday, April 22, 2013

Marfan Syndrome, Physical Characteristics in the Family

The photo here shows my two wonderful teenage children, one in college already and the other active in High School.  According to the last echo-cardiogram both of their aortas are already beginning to dilate.

Marfan Syndrome physical characteristics
As a child I too was tall and lanky, with long fingers, long arms and legs and a thin-skinny build.  Though these physical characteristics are not always indicative of Marfan Syndrome, they may be.

I am glad that we now know of the connective tissue issues our family members experience.  Knowledge is important.  Understanding and tracking health issues associated with Marfan Syndrome can save lives.  Whereas I never know I had connective tissue problems until  my aorta dissected, we know the kids have these issues and we can address them before acute problems arise.

Some of the symptoms I regularly experienced as a child included; sprained wrists and ankles, collapsed arches, pulled back muscles, multiple hernia surgeries, stomach hernias and then finally a completely dissected and aneurysed aorta.

The National Marfan Foundation website is an excellent place to learn more about this health issue.

Education about the medical issues associated with Marfan is critically important.  Know what resources are available to help you or others who may suffer from potentially life threatening health problems arising from Marfan related problems.

I'll be posting more soon about my unexpected aortic dissection and how I've coped and what I hope to do, as my primary care physician says is my 'full time business' - to stay alive.


Eileen Masciale said...

Kevin, So glad you found the National Marfan Foundation! Have you ever brought your kids to our annual family conference? We have a huge teen program as well as a growing young adults program. Plus all the medical information, psychosocial support and networking. It's in L.A. this summer. You can find the info on our website. Hope we get to meet you and your family. Eileen, NMF Consulting Director of Communications

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