Added December 7, 1998
Marybeth G., Norwalk, CT, USA
My 6 year old son michael has just been diagnosed in October with Marfan's. Our search came about as a result of the Today show back in February. I have one piece of advice for anybody who thinks they have Marfan DON'T RELY ON JUST ONE DOCTORS OPINION!!!!
He has a 46 degree scoliosis, diagnosed three years ago; and we've been trying to put a name/reason to it ever since. He's very tall and thin, but not too thin. We just found the dislocated lens in October (along with myopia), which brought us back to Marfan. He has also had hernia surgery, and his echo shows his aorta at "the upper limits of normal". He's now on 25mg of Atenolol a day.
As far as we know, Michael is the first with Marfan. His 8 year old brother James shows no symptoms.
I am interested in hearing from moms with young children, and also if anyone knows of any support groups in the lower connecticut/new york area.
Michael knows he is "different" (I hate to use that word), but he takes all of this in stride. (I think he likes all the attention from the docs!).
Added January 11, 1999
Gali, Israel
my sister and my self jast diagnozed with marfan.
my sister is pregnent now and very afreid.
we will be happy if someone can tell us about it, and most of all about pregnent with marfan
Added February 4, 1998
George, Henryetta, Ok USA
Hi My Name Is George and I have just figured out that I have marfans syndrome. I am 12 years old and I am just learning what marfans syndrome is and what it is about and how it gets spread thru out the world and how different people are afected by marfans syndrome and what damage it does to all of the people that have marfans syndrome. I would enjoy hearing from other people who have Marfans Syndrome
George
Added July 18, 2001
Michael Geronimo, Norwalk, CT USA
Michael is almost 9 years old with the Marfan Syndrome. He had a spinal fusion surgery when he was 7. He takes atenolol every night at bed time and has to wear glasses.
Michael would love to meet other Marfan friends. You can email him at
Added January 1, 2001
Shel Gibbons, Aldergrove B.C. Canada
My name is Shel Gibbons,I am male, 48 yrs. old, and was diagnosed with Marfan approx. 12 yrs. ago after my (then) 6yr. old son was diagnosed. I had an aortic disection 4 yrs. ago, but was treated with meds. for 2 yrs. 2 yrs. ago I had another disection, this time requiring a complete aortic replacement (thank God for dacron) during the operation, the blood supply was cut off to the spine for a length of time, and although the surgery was a success, it left me a T10 paraplecic, and confined to a wheelchair. (Sounds bad doesn't it). The good news is that the new aorta works fine and I'm still here, and going strong (although a little shorter) I am 6'6" stretched out. Both my 21 year old son, and my 18 year old daughter also have marfans but to date, no problems, although both are checked frequently.
http://www.ewheelin.com
Updated December 6, 2001
Jessica Goette, California
Hi! My name is Jessica. I am 12 years old. I am going to have a hip replacement in the next few weeks. I also have scoliosis. Once I was diagnosed with marfans (at birth) I began to wonder about what I really had. So, if you would like to e-mail me (if you have had a hip replacement or marfans) then contact me (ages (10-15)
Thank You!
princess16253@hotmail.com
Added December 25, 2001
Goldie, Athens, Greece
Hello,
Our son is 29 months old now and was diagnosed with the Marfan syndrom when he was born. Recently we also found out he has lens dislocation. If there is another parent either greek or another nationality living in Greece (or anywhere else) who wishes to speak and find a friend to go through this please email me.
Added March 3, 2000
govind.m, calicut,kerala,india
i am 17 with marfan syndrome(not very pronounced).my interests include writing,reading,listening to music etc.i would be delighted to receive mail from anybody of around my age who wants to be pals with moi .hope to receive some mail
Added December 7, 1998
Mark Grantham, England
HI, I am a 29 male with marfan and would like to chat to other people with marfan. I had just had a spontaneous pneumorthorax (collapse of the lungs). I like motor sports and motor bike.
Added August 7, 1999
David Grimsley, Jr., Hagerstown, MD USA
HI. I FOUND OUT I HAD MARFANS ABOUT A YEAR AND A HALF AGO. I WENT TO THE EMERGENCY ROOM ON SEVERAL OCCASIONS BECAUSE I COULDN'T FALL ASLEEP. I THOUGHT IT WAS JUST ANXIETY ATTACKS' AND THEY DIDN'T SEE ANYTHING WRONG AT THE HOSPITAL. FINALLY I WENT TO THE DOCTOR TO HAVE IT CHECKED OUT. AT FIRST THEY JUST TOLD ME I HAD VALVE DISORDERS, BUT THEY DIDN'T SPECIFY WHAT KIND, JUST THAT I HAD TO HAVE A M.R.I. TEST DONE. WHEN THIS WAS DONE THE DOCTOR DIAGNOSED ME WITH MARFANS SYNDROME BUT HE DIDN'T EXPLAIN WHAT IT WAS. NOW AFTER I FIND MORE AND MORE INFORMATION ON IT I REALIZE WHY HE WOULDN'T TELL ME. I HAVE TO TAKE 25 MILLIGRAMS OF A DRUG CALLED TOPROL XL EVERY MORNING. IT IS NOT GOING TO MAKE IT BETTER BUT IT IS SUPPOSED TO SLOW DOWN THE DETERIORATION OF THE TISSUE. I NEVER THOUGHT TO LOOK IT UP ON-LINE BUT I'M GLAD I DID. I AM THE FIRST CASE OF MARFANS MY DOCTOR HAS EVER SEEN AND THAT WORRIES ME BUT WITH THE HELP OF OTHER PEOPLE OUT THERE I KNOW WE CAN ALL LIVE OUR LIFE THE WAY WE WANT TO, NOT THE WAY DOCTOR'S EXPECT US TO. THANK YOU FOR TAKING TIME TO READ THIS AND ANY INFORMATION IS ALWAYS HELPFUL INFORMATION.
Added May 27, 1998
Susan Grossi, Aliso Viejo, CA, USA
I am 47 yrs. old and awaiting aortic surgery. I lost my 24 yr. old son, two 48yr. old cousins and a 12 yr old son of another cousin to Marfans. My mother and aunt continue to survive their anneurysms at age 70. I need to know the best surgeon in Southern Calif. I have Blue Shield HMO and I want them to approve a referral to Dr. Joseph Coselli at Baylor Texas. But I need to know, in case of an emergency here in Orange County Calif, who I should try to have operate.
Please contact me ASAP. Thanks!