Marfan Syndrome

I have Marfan Syndrome .Most people are not very aware of this genetic disorder .As it is not very common.Or people have just not been diagnosed with it .I doubt that it is tested for unless you have some of or several of the physical signs or medical symptoms .

I was not diagnosed with Marfan Syndrome until I was 31 years old.I was always a very sickly child ,very tall and thin in stature.I also always had heart problems when I was a child .When I was 27 I was told by a doctor that I needed to have open heart surgery right away .If I didn't that I would only have 6 months or less to live ,with out the surgery .

So on October 9th 2001 I went ahead and had the heart surgery .I figured that this was my chance to have a longer and healthier life . The surgery was not as bad as I thought that it would be .Since this was one of my worst fears .I had always worried about this .So my heart surgeon in Wichita ,Kansas did the 5 hour long surgery ,for a mitral valve repair and I also had ruptured chords in the lower left chamber of my heart .These help keep the heart open and working .When these chords rupture ,it is like a domino effect.

This is important to me to get this knowledge out there for those people who may have this and just not know that it exsists .I had no idea I had it for most of my life ! I just knew that I was ill alot .

There is alot of information that I have about this .So I guess that I will post another entry for some of the different topics on this that I have found out so far !


BeckiTerV BeckiTerV
2 Responses Feb 15, 2008

Thank you for stopping by and checking out the group that I formed on here .I am glad that you found it informative .Since this is the first time I have actually ever tried to form any kind of group .Also thank you for all your kind wishes and thoughts ! It is much appreciated !

Thank you for sharing... very interesting and informative. I'm glad you're here and wish you many many years of laughter...