Marfan Contacts T

Added January 21, 2002

Jack T., Bend, OR
I read on one site of a man who said his aortic problems were discovered during an examination for his INSOMNIA. Is there some relationship between sleep problems and aortic anomalies? I had a mitral valve porcine implant some years after a had skiing fall, then it was done again after a bout with endocarditis. I'm particularly interested in telling MDs about the look of Marfan individuals and the symptoms of Marfan-related heart problems.
jbrmthornton@juno.com

Added February 20, 2000

tarran, buckley flintshire uk
we have two sons with marfans mark is eleven and ben is three

Address updated May 13, 2001

Larry Taylor & Laurie Gelb, Monmouth Jct, NJ
Larry, the MFS patient, is 49 and has had his aortic valve replaced twice, lost the vision in one eye due to chronic retinal detachment, and is obviously hoping that the other eye's retinal repairs hold up. He has also dealt with cataracts, glaucoma, arthritis, diabetes, obesity, joint problems, etc. I, Laurie, am generally the e-mail correspondent due to more medical knowledge and less difficulty with reading. We have a teenaged son who appears unaffected. Of course, that does not imply that his life has been "normal," since he has been very involved with his dad's illness for several years. As an aside, we recently moved to NJ from Houston.

http://www.eclipse.net/~lgelb/

Hi! My name is Ted. I am eleven years old and I have Beals syndrome. (Congenital Contractural Arachnodactyly.) Beals is a lot like Marfan. I don't have very many friends because I'm different from everybody else. They tease me a lot and call me "Big Foot." I wear braces in my shoes and have scoliosis. I am the tallest kid in the class at school. I like music, art, and origami.
I'm looking for a friend across the internet that I can get to know and make friends with. So if anyone else is interested, please write me at our e-mail address.

Added June 21, 1999

Shana Tilley, Potosi, MO, USA I am 16 years old and was diagnosed with the Marfan syndrome when I was 3 years old.

Updated August 12, 1997

Hello.
I currently live in Washington, south of Tacoma. I am a 18 year old, 6'3" male attending college and majoring in pre-dentistry. I would like to contact anybody living in the Seattle-Tacoma area.
Robert Tompkins