Added March 7, 2001
Caleb, Grayson, Louisiana
hello,
My name is Caleb, I was dignosed with marfan when I was 10. I am now 16 and I have had many complacations with it. I have been under the strict care of a doctor since then and I am doing fine.
Added May 4, 2001
Don Cannon, Witchita, KS USA
Diagnosed 18 years ago at age 22. First known person in my family to have Marfans. Doctor's say my case is moderate (do not exhibit most traits associated with a full blown Marfan's case.) and the Beta-blocker has kept me stable from aeortic enlargement.
Added July 20, 1999
Carin
My name is Carin and I am 24 years old. I was diagnosed with marfans when I
was about 6 years old. I stand about 5 10 and weigh about 100 lbs. I would
like to find out more on marfans and other people in my area. If you can
help that would be great. Thanks a bunch.
Added May 9, 1998
Nat Carswell, Louisville, KY
I'm a 6'6" 25 year old male diagnosed with marfans at age 10. I have most of the symptoms, including dislocated lenses in the eyes, MVP, scoliosis, etc. Had emergency surgery in '92 to replace my aortic root (had dialated to 9.5cm, but had not disected). Haven't had any problems since, but still getting annual checkups. I have never talked to anyone else with marfans, but would enjoy the opportunity.
Added November 26, 2000
Joan Carter, Eastman, Georgia
My 17 yr.old son has Marfans. He is 6'7" and 155 lbs.
His aortic root measurement is 4.0cm. Our 15 yr. old has been diagnosed with Marfans also. I would love to hear from other mothers!
Added November 6, 1999
Terri Carter, Littleton, CO USA
I am 47 and have been diagnosed with Marfan. I am looking for referrals to more Marfan knowledgeable physicians in the Denver, Colorado area, especially a cardiologist and a geneticist so I can have my 16 year old daughter evaluated Too often, it feels like trial and error in my current monitoring and treatment of symptoms. Having other females with Marfan's to communicate with would be valuable also.
Added August 26, 2000
Joseph Caruana, Malta
I am 37 years old and have juts come out of heart surgery due to Marfan's syndrome. I had no idea I had it and only show a few symptoms. I would like to get to know people who have gone through surgery and how thier lifepstyle has changed (if it has ?. It has been quite a shock as I had been leading a very active lifestyle. So now I need some support to start again.
I look forward to your advice.
Added April 15, 1999
Chelsey Cash, MN
Hi, I am an 18 year old female with Marfans. I love anything outdoors and I am learning to scuba dive. I would like to here from anyone else who dives or is close to my age.
Added January 16, 1999
Betsy Cates, Baltimore, MD
Hi, I'm a 38 year old mother of one (15 year old girl). I have had 3 desending aortic aneurysm repairs in the last 12 years (along with 7 other surgeries). My last thoracic aneurysm repair was in 1993. I'm scheduled for accending aortic repair (5.5cm) in 3 weeks. My doctor has assured me that recovery will be easier, because of recent improvements/techiques. Anyone had similar surgery? Any advice? Realistic recovery time? I could use a few words of encouragement. thanks betsy
Added April 17, 2001
Catherine, Albuquerque, NM
My name is Catherine and I am a 16 year old with Marfans. I have known about it my whole life and have been affected by it. I have had three eye surgeries in the last six months. I have scoliosis and wore a brace for a year. I finally sped growing once I reached 6'2".
I have never heard of anyone else, besides my mom, having Marfans and I would love to hear from anyone who has been affected by it.
Added February 6, 2000
Sarah Cayo, Coloma, MI
Hi my name is Sarah. I am 15 years old. I would like to talk to anyone my age. I have had many problems associated with this disease. I wear leg braces, have scoliosis but can't wear a back brace because it breaks my ribs. I have lost half my lung capacity and have had a difficult time with the medicine I take to reduce my blood pressure. I would like to talk to someone about how they deal with these problems and problems being accepted as just a "normal" kid with other kids my age.
I am sorry to say that Sarah died in June 2000 at age 15 1/2. Sarah had been getting echos and MRIs every four months to check the size of her aorta. In February 2000, even though she had an aortic root measurement of 5.5, her doctor didn't schedule surgery for her.
Added March 11, 2000
Chris, Athens, Greece
HI, MY NAME IS CHRIS AND I HAVE MARFAN'S TOO.I AM 25 YEARS OLD AND I'VE HAD TWO SURGERIES ON MY AORTA. I WAS DIAGNOSED WITH MARFAN TWO YEARS AGO,I AM 203cm HIGH AND I AM THE ONLY ONE WITH MARFAN IN MY FAMILY. I WOULD BE DELIGHTED TO HEAR FROM ANY ONE WITH THIS DISORDER AND EXCHANGE EXPERIENCES OR JUST TALK.
Added October 8, 2001
Claire, Dorset
I would love to hear from anyone with Marfan Syndrom as I do not know anyone with the condition. I am 18 years old and taking my A-Levels this year (01). I am looking for someone around my own age, to talk about dealing with the condition!
Cant wait to hear from you!
Claire n7cbennett@user.purbeck.dorset.sch.uk
Added March 11, 2000
Helen Clarke, Worcester, UK
I am 28 years old, I have recently had heart surgery to replace my aortic valve and root. My mother and sister both have Marfan Syndrome, both of which have had heart surgery similar to mine. I am 6ft tall and quite thin, so I am typical Marfan!
Added May 24, 2001
Catherine Clifford, Alburquerque, New Mexico, USA
I am a 16 year old girl with Marfans who would love to hear from anyone, especially people my age,
about their experiences. Please write me.
Added August 26, 2000
Billi-Jo Cockerton, Red Deer. Alberta, Canada
Hello, my name is Billi-Jo and I have Marfan's Syndrome. I was diagnosed with Marfan's syndrome when I was thirteen years old, and I am now twenty-three and a mommy to a wonderful ten month old boy. The reason I write to you today is because of my son. I do have many symptoms of Marfan's and also have the heart condition to go with it, but my son is not showing any signs of this disease. Maybe because he is young, but I am trying to find out when and if any signs show up in our children. I am a lucky one. By going through many of your web sites I have found that I do not have Marfan's as severly as others. But I do have the chance of passing it on to my children 50/50. I just want to ensure the best care for him. So if anyone has information on this, please email me at
Thanks!
Billi-Jo
Added June 22, 1998
Ricky Collins, Great Lakes, Illinois, USA
My name is Ricky Collins,I have known of my marfans as far as I could remember. Im 14, and I live in Illinois My mom also has Marfans. I have MVP, dislocated lenses Scoliosos(i dont think thats spelled right), dilated aorta, I take a Beta Blocker (50mg once a day). If anyoneneeds to know any thing about marfans my mom is a expert(she done a lot of research)just call (847) 785-1357 ask for Kathy. I want to meet someone with marfans. I have had rods put on my spine becouse of the curve. If your about my age and have marfans gimmie a call live near me call, I like all kinds of stuff music=metal, alternative,I HATE RAP. and i play the drums(2 and a half years) I skate(board)and I am totally into NIRVANA!!!. and thats about. If you've got marfans and live close to my call me and maybe we can hang out. e-mail me if you want to talk about marfans
Added November 7, 2001
T.J. Conley & Jennifer Roadcap (mom), Broadway, Va.
Hi Everyone! I'm Jenny my son is T.J. who is 13yrs old and we were told when he was 6wks. old that he might have marfans. We have been seeing doctors ever since and he still hasn't been actually diagnosed. No one else in the family has it that we know of. Maybe you can give me your opinion. My opinion he does. He is 5'6" and very skinny. He has verylong fingers and toes and shoe size is 11 mens. Pigion- chested,nearsighted,some deformed bones,slightly enlarged aorta,very double jointed,hip and knees dislocate,high palatte,hearing loss, lazy eye, keeping an eye on scolious. my concern is how many surgeries he has had!and if we should allow any more! surgeries-neck fusion, ankle fusion, knees and toes,ear tubes,and some others, and more to come! It sounds like alot but we are very lucky after hearing other stories. We would appreciate some advice and making some friends with people who know where we are coming from. thanks
T.J.s mom.
Teammomjen@aol.com
Added June 11, 1999
Steve Crawford, Fort Francis, Ontario
I'm one of three in my family with Marfans. My father passed away at age 35 and my younger brother at age 29. Grew up in the Hamilton Ontario area where my mother and brothers still live. I have had both lens removed and replaced with implanets. Have had aortic valve and mitro valves replaced in Jan /99 with St Jude mechanical valves.
If your in northern Ontario vacationing or just passing s and say hi.
Added November 26, 2000
Cricket, Windsor, Ontario Canada
I am a 28 yr old female afflicted with Marfan Syndrome. I am seeking a forum wherin I can interact with other Marfan patients.
Updated September 29, 1999
Ana Cros, Valencia, Spain
Hallo, I am Ana Cros, from Valencia (Spain). My husband Emiliano (born in 1961) and my son Emilio (born in 1994) have Marfan Syndrome. I would like to contact people from Spain, or people with affected children. My e-mail is