Added October 26, 2001
Heather Ramos, Vacaville, California
Hi my name is Heather and Im 27 Years old. I was diagnosed with Marfans at age 2. I have many of the problems that goes along with having Marfans. In 1991 I had an aortic valve replacement and now take coumadin everyday, I have had the lenses removed in both of my eyes this year and did not have lenses reput in, and I have many of the joint problems. I am interested in meeting and talking to other people with Marfans. Please feel free to email me anytime.
HeatherRamos@att.net
Added September 19, 1998
Taryn Rapitta, Kipling, Saskatchewan, Canada
Hi, I'm 20 years. I was diagnosed in June 25, 1995 by a genetic specialist. How I was diagnosed is that I started to get chest pain, it was like someone was shooting at me. We found out that my mother passed it down to me. My father and sister do not have Marfan Syndrome.
Added January 4, 1998
Raymond, Hartsdale, New York, USA
I have a close friend who may have Marfan's--she is about 6 feet tall with elongated lower half of the body and fingers and scoliosis. We are trying to check it out. We learned that there is yet another syndrome called "Beals Syndrome" and that might be the correct diagnosis. I can't find anything out about Beals Syndrome.
Can anyone out there send me some information or some links I can use?
Thanks,
Ray
Added February 25, 1999
Arnold Reed, Harlan, IOWA, USA
father die are 42 age he have marfan sydrome heart.have i the marfan syndrome like have father 47 age .have heart and lung.
Added January 27, 2002
Reid, Littlestown, Pennsylvania, USA
My son Reid age 31\2 was Diagnosed with Marfans on January 26,2002,He was having problems with his eye sight so at a routine eye exam we found out he has upper ectopia lentis,which with eye glasses can be corrected.Our next step is to see a Genetecist to prove that this is the correct diagnosis and if so off to the cardiologist for more testing.This came to me as a very big surprise,I had never heard of the disorder,but with this sight and many others I will educate myself to the fullest.My faith is in the Lord so through prayer and a strong walk with the Lord our family will overcome this obstacle and what ever is thrown our way.I would be interesting in hearing from anyone in which we could share tough times, thought or even a shoulder to cry on.
rajurela@juno.com
Added February 25, 1999
Michelle Reid, Fall River, NS, Canada
My 11 year old daughter, Julianne was diagnosed at age 8. She is 5'8" tall and awaiting hormone therapy treatment to reduce her adult height, if possible. The doctors estimate her finished height to be between 6'2" and 6'6". Has anyone had this kind of treatment and can give me some advice? It has only been done once at our hospital so not much history. Help!
Michelle
Added January 4, 2000
Rhonda
I have a 9 year old son with Marfan Syndrome - his heart and vision have been affected.
Added August 24, 1997
My name is Liz Rice. I live in New Jersey. I have Marfan Syndrome. I was diagnosed ten years ago while attending the National Marfan Conference on behalf of Tall Clubs International (TCI). I went through all of the steps in the testing process in order to write an article for the newsletters of the TCI clubs encouraging them to get tested. I never thought that I could have it - I'd been to specialists re my height, and scoliosis.
I am once again the TCI/NMF liason.
http://www.lizannes.com/
Updated January 21, 2002
Kenneth Richards, Coal City Grundy
I am a 20 year old male with Marfans and would like to meet and speak to someone who looks and thinks and understands the things we Marfans do. I love old movies and friends. I am a happy person and love happy people. I have 3 brothers and one little sister and a MOM. I love music and learning and making new friends, So if you are interested in a penpal please write
Alucard1943@aol.com. :) Ken
Added July 7, 2000
The Riley Family, Nottingham, England
Diana, Steph and Nick are all sufferers of marfan syndrome. Mother, Diana has had aortic root and valve replacement and mitral valve surgery. Daughter, Steph aged 23, lives in Birmingham has had a rod in her spine to correct scoliosis, and is awaiting aortic root replacement. Any advice and experiences would be welcomed - particularly from women who have gone on to have children.
Brother, Nick is 19 yrs old and at university. He is 6ft5 and has a concave chest, but no heart problems.
Hello my name is Susanna T. Robarge and I would like to be added to the list of names on this system. My e-mail is srobar01
I am 20 years old and do not know of anyone else with marfan's.
If possible I would like to get more information on it. I am currently a junior majoring in business administration at shepherd college. Thank you.
Susanna T. Robarge
Added October 25, 1998
Robin, Wareham, Massachusetts USA
My name is Robin, I am 36 yrs old, and have Marfan Syndrome. I have had 7 operations, 6 to repair joints and 1 to remove my left lung. I am wondering if anyone has any similiar problems with thier joints and the connective tissue deteriorating. I am interested in corresponding to anyone, I will gladly write back. I thank you for listening and wish everyone a nice day.
Added March 11, 2000
Julia Robinson, Birmingham, United Kingdom
Hi, My little boy (age 5) has just been diagnosed with having Marfan. I was completely shocked as I had never heard of the syndrome before. I have found out a lot of information via the Internet, and would be grateful if anyone could tell me what kids with Marfan should be doing/not doing. Basically I'm finding it hard to get hold of any information on caring for a child with Marfan. As it is a first case for my consultant, I've not been given too much advice.
Added January 1, 2001
Taina Rodriguez, Chicago, Illinois
I WAS DIOGNOSED WITH MARFAN'S WHEN I WAS SIX MONTHS OLD AND ALL MY LIFE I FELT LIKE THE OUTKAST AS WELL AS THE UGLY DUCKLING. NOW I AM 20 YRS OLD AND STILL VERY SELF CONCIOUS BUT VERY HAPPY THAT I AM NOT ALONE!!
Added March 26, 2000
Barbara Rohlmann, Shelburne, Ontario, CANADA
Hi! I'm 38 and doing my best to cope with Marfan's Syndrome. The past year has been more difficult. I'm the only one of five siblings who has it. I'm 6'3" tall and thin. I was FINALLY diagnosed in 1993 after spending years looking for an answer. Since age 13 every doctor I went to gave me a different label. Thanks to my family, I'm here today. My father was 55 when he passed on. I'm still learning about this. Would love to hear from some of you and share/support. Thanks. Barb
Added March 7, 2001
Brian Ross, Canada
My son was diagnosed with Marfan's syndrome at the age of 10. Before that they did so many tests on him that one particular test that is constantly on my mind is the muscles biopsy on his right arm . He is scared for life now. I am a single mother and I don't quite know or understand what marfan's syndrome is. The more I read up on it , the more I get confused on how to explain when people ask me what Marfan's syndrome is all about. I also very overwhelmed and scared by this so called Marfan's syndrome. I'm scared for my son. I wish I could find a support group in my town that I could talk to about my fears. I don't know where to turn to. Please help us. My son just got his home computer 1 month ago. We have put the internet in the computer but we are not yet familiarized with e-mail and chatting with other people about his illness.
Added December 27, 1998
Calum Ross, Fife Scotland
I have had marfans syndrome all my life. My main symptoms seem to have been eye problems I am unsure whether marfans is a total disorder or if you can have certain symptoms. I am currently trying to emigrate to Australia and I have been asked to get a cardiac screening, ecg and echo and frankly this worries me incase they find something. I am a reasonably active person who has devoted my life to helping others if i can be of any support to anyone then please email me.
Kindest thoughts to you all
Calum Ross
Hi,
My name is Carol Rudes and my son, Mathew, has Marfan Syndrome. (No family history) He is ten years old and would like to share his experiences. He is a great expert on managing doctors as he has lots of specialists. We live in the Los Angeles area. So far he has had two life saving heart surgeries, multiple orthopedic surgeries and many eye problems. This hasn't affected his sense of humor, though which is great! If you would like to correspond with Mathew or myself please email us at