Jabe, Sydney, Australia
Hi
I have marfans and don't know [or have ever met] anyone else with it! So i'm quite curious about others and what they look like, they're experiences [surgical or otherwise] stuff like that. I am 26 and live in sydney.I have had an aortic valve put in,my specialist is Dr Richmond Jeremy and he is pretty cool.I am 6"2 and very long and slender [can you imagine? HAHAHAHa]O.K I hope i hear from someone BYEBYE JABEBABE
Added April 15, 1999
Jackie, Sussex, UK
Hello, my name is Jackie and I am nearly 40 years old.
Although I have scoliosis and poor sight, I was not told that I had Marfan Syndrome until I was expecting my second child. Even then, my doctor advised me to 'go away and forget about it'!
The subject was not mentioned again until I had a third child, five years ago. He has inherited the disorder and his aorta is approx. 50% larger than the average. Consequently, he is on daily beta-blockers. He also has mild scoliosis.
I would like to hear from anyone in a similar situation, to swap Marfan-related information and also for more general friendly chat. Jackie.worthing
Added December 8, 2000
Jaimee, Pennsylvania
I am the only person in my family to be diagnosed with Marfan. I have a sister who does not seem to have any symptoms. I was diagnosed in my early teens while being treated with a back brace for scoliosis. Shortly after being diagnosed I was seen by a cardiologist and put on beta blockers for aortic dilation. I also have MVP. I am not monitored for scoliosis anymore, but see a cardiologist every year for a checkup. I was taken off beta blockers several years ago. I am also nearsighted with astigmatism, have flat feet, and have the tall, lanky build associated with Marfan.
I am now 24 and my husband and I are considering having a family. We always assumed that if my heart/body could tolerate the pregnancy, we would try to have a baby. We had never really thought much about the genetic side of things until recently. That's when I began searching for information on the web. Throughout my teens, during the bulk of treatment, I was never given much information about this disease. I am concerned now about the possibility of passing this disease on to any children, and also about how my symptoms might change/worsen as I get older. I don't know how I would deal with having a child who has worse symptoms than myself. It's impossible to know if that might happen, and now we are thinking about not having children. If anyone has gone through this, I would greatly appreciate any words on your experience, or resources that helped you in your decisions. I have never met anyone else with this disease.
Thank you ju
Added October 8, 2001
James, New Brunswick, Canada
Howdy. I've just turned 20 and i've known about my ticker since grade 7; enlarged aortic root and mild MVP.
I've been through most of the stuff associated with Marfans, and had theheart (lucky to get away with a fix-up job on my Mitral Valve rather then replacement) a year ago this coming November 3rd.
It was the hardest, most painful and (in a way) the most fulfilling thing i've ever been through. Yeah, so i sound like i nut. If you feel like droping me a line, please feel free. Remember: Things just are; whether they are good or bad is entierly up to you da_spoon_mon@hotmail.com
Added September 9, 2000
jane, england (cornwall)
hi
i'm a 13 year old girl who is quite tall with long legs!! I have glasses and very big feet!!!Sorry if that puts you off!
well please e-mail me if you can!!!
jane j14k
Added October 23, 1997
Hi my name is Janet and I would like my name and address added to this list. I am 17 years old and was diagnosed with marfans a few years ago. I would love to talk with anyone about this disease.
Please email me janetm
Address updated December 7, 1999
I am Jarlath, aged 36, married to Brigid and we have three kids (two with MFS - the third is only a baby so is too young for a diagnosis). Well I am a Clinical Psychologist and have had nearly every cardiac complication of MFS (aneurysm, dissection, surgery and post op. complications) but bearing up well. The future for myself is pretty bleak, however I am enjoying life immensely. Brigid is a Cardiac Theatre nurse and has decided not to go back to work just in case I turn up on her operating table!
Jarlath and Brigid abacushttp://www.jarlath.co.uk
Updated May 18, 2001
Jennifer in Pennsylvania
I was diagnosed with Marfan syndrome at the age of 4, and spent the next 20
years coming to terms with it. Now 32, I've so far escaped any serious heart problems, though I've had the collapsed lungs, lens removals, detached retinas, etc. I'd be glad to try to answer any questions you have, or just offer support. JLHBaker
Added October 23, 1999
April Jernigan, Charlotte, NC and Orlando, FL
I am a 20 year old with suspected Marfans. Basically the doctors are afraid to give me a positive diagnosis.. not sure why. I am a theatre education major at the Univeristy of North Carolina at Charlotte. I have had a spinal fusion (Harrington Rods, 92) and I also have heart involvment rurulesunc
MY NAME IS JESSE, IM A 20 YEAR OLD WITH A 16 YEAR OLD BROTHER. WE BOTH HAVE BEEN THROUGH ALOT WITH MARFANS. I HAVE SO MUCH TO OFFER, ABOUT MY PASSED AND PRESENT LIFE. MARFANS IS A HARD LIFE TO LIVE, I WOULD BE SO HAPPY TO TALK WITH PEOPLE THAT HAVE IT. I KNOW THERES SO MUCH WE COULD SHARE. SO PLEASE E-MAIL ME. PMorris88 E-MAIL PMorris
Added May 21, 2001
Jessica Rose, Canberra, ACT, Australia
Hi, I am Jessica Rose, I am 3 years old. I am the only one in my family with Marfans. I had an aortic graft in April 2001, and I am much better now. My mum - Pamela - would like to chat to other mums with children who have Marfans. Expecially in Australia. little_jessica_rose http://www.geocities.com/little_jessica_rose/
Added June 11, 2000
Jim, Arizona
It's nice to hear there's other people like me. I have beals to, my symptoms are long very skinny fingers and feet also severe scolosis I had my spine fused at six years old. I spent most of youth being laughed at, which caused me to get in alot of fights. I would love to talk to someone that can understand what being different is like. jglenschwab
Added April 9, 2001
Becky Jinks, Staffordshire England
Hi, im a 20 year old. i was diagnosed with marfans at birth and have done alot of research on it. If anyone has any questions or just wants a general chat please drop me a line. At the moment i and studying performing art, singing and theatrical make up. I look forward from hearing from anyone.
loopygoth
Added December 7, 1999
Joanne, Cheshire, England
I am 27 years old. I was diagnosed at thirteen. I have a nineteen month old boy called jake.
I am not terribly affected - tall, thin, mitral valve problems etc.
I would like to talk to other similar people if you can put people in touch. jgoulding
Added June 21, 2001
Jocelyn, Windsor, Ontario, Canada
I am a 29 year old Marf with predominantly skeletal and cardiac manifestations. jiminycricket.isnt
Added January 28, 2001
Jodi, Wisconsin
Hi, my name is Jodi, I am 14 years old, and recently I have had some passing out episodes, I have had a lot of tests this past couple months, and recently my doc is talking about Marfans syndrome, I am no longer aloud to play basketball, or any other sports, until I have more tests, please write me, and let me know about the testing process, and some of the long term affects, thank you. Jodeman0104
Added March 19, 2000
Linda Jones, Canada
I am now 53 in April. I found out that I was a marfan when my heart valve came off and the aorta had to be repaired when I was 42 by Dr.Shragge at Hamilton General. Since then I have had 2 major operations by Dr.Tyrone David at Toronto General (1992 and 1998). I have had strokes and am very slow at typing, but I would try very hard to answer any questions you might have about me. I have a husband and son that are very good at helping me. (I am on Canada Pension Disability). dln.jones
Added April 15, 1998
Mike Jordan, Southern California
MARFAN SYNDROME FROM BIRTH
10 YEARS OLD JOJO1720
Updated September 27, 2001
Joshua, Tallahassee, Florida, USA
i am 18 years old i don't have marfan sydrome .I have pectus excavatum an it has had a dramtic impact on my life itself no one really know because it not them in the body .But family seems to be kinda helpful an what little friends i have an god he only knows how i feel an what goes through my mind everyday but i gave myself to him an i love him .only god know when i will die i am not scared of dieing .I wish i could have A MILLIONS FRIENDS WITH MILD DEPRESSIONS IN THER CHESTS. UT THERE IS NOT ANYONE I KNOW WITH IT AN IT SUCKES.I TRY TO LOVE MY LIFE AS MUCH AS POSSIBLE BUT I THROW IT ALL AWAY IN THE BLINK OF AN EYE SOMETIMES.GOD KNOWS ME BETTER THAN I DO !!!!BUT WHO DO YOU KNOW WHO HAS BEEN READY TO DIE AT AGE 17 OR 18 JUST BECAUSE THEY DON'T LOOK RIGHT .AN YOU KNOW I AM AN OUTCAST OR FREAK WHAT EVER BUT I KNOW I AM NOT A FREAK IN GOD'S EYES.SO IF THERE IS ANYONE OUT THERE ON MY FREQUENCY PLEASE E-MAIL OR WHAT EVER!!!!!! REEVESJOE65@AOL.COM
Updated May 13, 2001
Jim Judd, Laingsburg, Mi, USA
I was born in 1981, and was diagnosed with Marfrans Syndrome. Now i am 19, and i am 6'7", around 180 pounds. I have already went through a 17 and a half hour Scoliosis Correction Surgery, and i have had my Sunken Chest brought out. These surgeries all happened my Junior and Senior year of high school. I would like it if someone in Michigan around my age would e-mail , so we can chat. jimjudd