Wednesday, February 2, 2011

Marfan Awareness Month

February is Marfan Awareness Month. This is a genetic disorder of the connective tissue that Todd, Michael and Katie all have. A person with Marfan syndrome has a 50% chance of passing it on to any offspring. It affects 1 in 5,000 people worldwide, even though many of those people are undiagnosed. It mainly affects the heart and blood vessels, skeleton, and eyes. It can be life-threatening if not diagnosed and followed closely by physicians.

When I tell people that Todd, Michael and Katie have Marfan syndrome, most people have never heard of it. So I think Marfan Awareness Month is a great idea and much needed. Here is the National Marfan Foundation website. There is some really good information on there, as well as links to an online community of other people affected with the disorder.

Great strides have already been made in the treatment of this disorder. When Todd was younger, his life expectancy was 35. Now the doctors say that he can expect to live well into his 70's. Isn't that amazing?

3 comments:

Maya said...

Hi! I'm another SITStah who also has Marfan :-) Happy "Have a Heart" month!


~ Maya
http://marfmom.com

Carrie77 said...

That is amazing the advancements in treatment, how wonderful!

Steph said...

What great strides they have made for Marfan!