I Have Marfan Syndrome

I am, Geoff, a 33 year old father of a 3 year old girl and a 1 month old girl. I am 6'10" to 7'0", depending on how my scoliosis is doing on any given day.

I have Marfan Syndrome. I was diagnosed at the age of 8, along with my mother, 2 uncles and 1 aunt. One uncle died about 18 years ago (at the age of 30) of an enlarged heart. the other uncle had his aortic valve replaced, along with my mom and aunt. My mother subsequently had her entire ascending (or is it descending, I always get confused) aorta replaced after a disection. To the right is a picture of me with my mother taken in May, 2008.

At the age of about 20, I had my first open heart surgery to replace my aortic valve. a year and a half later I had that valve replaced with a larger one. Now, I'm looking at the possibility of a third surgery to replace my mitral valve.

My mother has had 5 surgeries, or there abouts, and my daughter is increasingly showing signs of having Marfan as well (although she is only 3 years old, and since the body is constantly growing at that age, it's hard to tell).

That's me on the left. I play in a Hard Rock band - The Raygun Girls. We tour on occasion - during which my band mates usually hate me because I can't carry my amp (not supposed to lift more than 10 lbs!).  That was also back in 2007.  Haven't played in 2008 due to increasing health issues.

That's a short version about me.

If you have any questions about me, my family or lifestyle, please feel free to contact me. I'm very open about everything.

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Lucia   |2008-07-12 18:42:05 I'm Geoff's mom. I have had 4 open heart surgeries. The first at age 26 for tan aortic valve replacement, the second at 35 for repair of a pseudo-aneurysm on the right coronary, the third for repair and replacement of the entire descending aorta to the bifurcation due to two aneurisms. The fourth and last surgery replaced my mitral valve. So, I've been cut twice in the front, and one on each side. I cannot have any more due to all the scar tissue. Reply | Quote 0   0

Monica   |2008-07-09 16:27:36 HI, it is your aunt and grandma, here. It is great you have started this site; we could write a book about our physical, emotional and mental experiences with marfan's. I, for one, have finally accepted the limitations that have come with the symptoms I have: tiredness, arthritic pains, several scoliosises along my spine--did you know you could have double scoliosis on your neck? I listen to my body and rest as I need most of the time; luckily, my job allows me to nap, even if 10 min., daily; and being flat on my back helps a lot. I don;t have dural ectasia as your mom does but laying down helps with the back pain. I wanted to add that your uncle also has 2 children, 10 and 13 with marfan's, the younger one's aorta is enlarging as she grows rapidly. If puberty comes early, her growth will be slow down; will it also slow down the aortic dilation?? most likely not. I had no idea your heart was 3 times larger than it shou... Reply | Quote 3   0

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