Added September 24, 2000
Kamille & Kaitlin, California
We are twin 8 year old girls. Our Mom and us just found out that we all have Marfans. Our Dad and brothers don't have it. We would love to correspond with anyone who has Marfans and would like to know how you handle beta blockers and which beta blockers you are on. We love to read and write, so please email us. Thank you.
Added September 23, 2000
Katja & Emil Karajic, Ilirska Bistrica, Slovenia
HI, WE ARE BROTHER (17) AND SISTER (25) WITH MARFAN. WE WOULD LIKE TO SPEAK WITH PEOPEL WITH THAT DESIESE. PLEASE CONTACT AS.
Added June 21, 2001
Karen, Michigan
Hi! First I would like to thank Jeanette Navia for this wonderful site. She has done a sensational job in helping to bring us all together! Before I give you my background I would like to mention that my current interests are about joint problems. Recently, do to my complaints about leg, knee, and hip pain a x-ray was taken of my hips that showed "Protrusio Acetabulae". I have found little information about this hip problem. And, would greatly appreciate any information from others about their experiences, and procedures that were performed.
I am 34 and live in Michigan. I was first diagnosed w/Marfans when I was also diagnosed w/MVP at age 17. Although I have no family history of Marfans, I was surprised that I was not diagnosed sooner, because many of the signs were there. I had a murmur sense I was a baby (probably the MVP), I'm tall (6'3 ½ "), very slender (as you can imagine I was teased a lot in my teens), have pectus excavatum (I've always wanted it corrected. I've dreamed about wearing a bikini ;-) , but hear it's a rough surgery.), high palate (causing sinus problems), had to wear braces, and am extremely nearsighted ("coke bottle" glasses until they made contacts for astigmatism). I have long loose jointed fingers (w/typical thumb sign), suffer from fatigue, light headedness, and had lung problems in the past. I am on a Bata Blocker which I think may cause me to be depressed sometimes.
My Mitral Valve was repaired when I was 32. It was my first marfan related surgery, so I consider myself lucky :-)! What was suppose to be 5 days in the hospital became 3 ½ weeks due to complications. I was grateful for my very supportive mother, who stayed with me in Cleveland the entire time. I've been told that my aorta is of normal size, and I am praying it will be awhile before any surgeries on it.
Anyway, I think I've written/typed too much ;-). Because no one else in my family is affected, I would love to chat/communicate with anyone else affected by the "Marfan Syndrome". Maybe we can learn from each other.
Added January 15, 2001
Karen, Port Jefferson, NY
My name is Karen and I have a 9 year old son with marfan syndrome. He is interested in meeting/talking to another child similar to himself.
Added November 6, 1999
Karen K, Tucson, AZ USA
We always knew my wonderful husband had Marfans, but only found out what that meant in the last year. We have 2 children still at home who are having a difficult time understanding what is happening as our whole family is. It would be so nice to "talk" with others who are sharing this emotional roller coaster ride. I am 43 and my husband is 39. Our five children range from 8 to 27. Please share your wisdom and compassion with this Marfans wife who loves Jesus, her husband and family so very much. Thanks in advance...
Added November 7, 2001
Kari, Beaumont, Texas, U.S.A.
Hi, I am in my 20s, and have had problems with Marfan's since the age of 13. I have a growing list of things, including heart, lungs, skeletal, spinal problems..and more. I am currently on SSI disability. I would love to talk to anyone else with the same experiences as myself...I would love to have some friends who understand what I'm going through. I would love to hear from you!!!
Peaches9778@aol.com
Added April 12, 2001
Kathryn, Melbourne, Australia
Hello, I am 31 years old, mother of 2 children, diagnosed with Marfan's Syndrome about 12 months ago, coming to terms with it all, as well as Cystic Fibrosis and Oesteopenia. Please feel free to write to me, love to hear from you.
http://www.angelfire.com/ms2/CysticFibrosisMarfan/index.html
Added May 31, 1999
Kathy, Hoffman Estates, ILL USA
My son is 15 years old and has many medical problems since birth ,and marfans has always been brought up. He is 6ft7 very long lengthy finger,and has many other symptoms of marfans that I've been told. He will be undergoing surgery on his feet this july and the first thing out of the dr's mouth is does he have marfans? I'm at a loss. Dr's have had questioned it for many years, but no one will take the initative to diagnose him with it or not. Can some one please send me some information on symptoms of marfans and who should I have my son see for a complete evaluation.Do you have to have problems with the eyes and the heart before you are considered to have marfans? Can you not have marfans at the age of 15 and then have it at 20? I appreciate any information that you can give me.
Added October 4, 1999
Jason Keith
Hi my name is Jason Keith and I am 23yrs old. I was just diagnosed with Marfan's in March of this year after I had an aortic aneurysm. I am doing alot better now although the first few months were really hard physically and mentally. I was very active in sports and weightlifting so my doctors feel that they caused the rupture.
I know enjoy playing golf, and pool and going downtown with my friends. I am still single and for now I'm loving that..) The only complications I seem to have is once in awhile I see a little black dot in my field of vision in my left eye and I occasionally see waves in the outskirts of my field of vision that usually lasts about 20 minutes or so... Anyway, to everyone out there stay positive and enjoy every day to the max...)
Feel free to email me at
Added March 30, 2001
Pam Kelso, CHAFFEE, MO. SCOTT
I AM 48 (4/10/52) AND HAVE KNOWN I HAVE HAD MARFAN'S SINCE 1981. DOCTOR'S SAY MY KIDS DON'T HAVE IT BUT SOMETIMES I WONDER. MY SON IS 6'4" AND THIN. I HAVE JUST ABOUT EVERY SYMPTOM BUT THE LENS. I AM ABOUT TO GO TO THE DOCTOR ON 4/2 AND AFRAID HE IS GOING TO TELL ME I NEED A VALVE REPLACEMENT. DO I DO IT AT THE HOSPITAL I WORK AT OR GO TO ST. LOUIS WHERE THEY DO MARFAN'S FREQUENTLY? LET ME HEAR FROM SOME OTHER MARFANER'S.
Hi
My name is Ken. My wife and I adopted a crack baby that was not wanted by it's mother. We fostered this child for Three years and then thru the system of social services, and the courts made him a part of our family. Kathy my wife is a nurse at Children's Hospital. Born with a drug infested body, she cared and learned to love him. As foster parents the state ask if we would foster this child. We of course said yes. For three months we painfully watched as our baby went thru drug withdraw.
David is 6 years old now with Marfan Syndrome. I could spend hours telling of the pain, tears, and hugs that I've been thru over these years. The storys long and I wish I could tell it all. Kathy has started a Marfan support group here in Buffalo to help as many people as she can.
Updated February 26, 2000
Ken, USA
Im 17 years old, and i have marfans. I like just about anything, so e-mail me if ya want. I like to read, draw, ect.
Mary Kerchner
I am one of at least three generations in my family who is affected by Marfan Syndrome. We know that my grandmother, my mother and all of her sibs except one, and my brothers and myself are affected by "IT". I had one cousin who had it, also. I had cardiac surgery at Johns Hopkins in 1978, back in the old days prior to the founding of the NMF. My younger brother had the surgery five years ago and what a difference from when I had mine!!! My neice had a spinal fusion for her scoliosis a year and a half ago and was started on a beta-blocker this past Dec. after her latest echocardiogram. She is just turned 13.
I am in the process of working to set up a support group in Western Pa. with Dr. Pyeritz and his team at Allegheny General Hospital here in Pittsburgh. This has been very exciting to me because I have been trying to do it on my own and found it very overwhelming. Now I feel as though I have unlimited resources available.
Would be willing to "talk" with anyone who has questions, information on groups, or just wants to talk.
Mary Kerchner
My e-mail address is
Added August 9, 1998
Helen Kingston, New Zealand
Hi , my name is Helen Kingston and my husband Bill has the classical skeletal features of the Marfan Syndrome, however for years the Drs. here debated whether he was in fact Marfans. Our 2 sons are also 7feet tall and have all the skeletal features. Our older son is also myopic and the younger has recently been diagnosed with a mitral valve regurgitation. Both boys have had joint surgeries, the younger in particular has had a lot of joint and bone problems during his growing years. They are now 25 and 23 years old.
My husband and both sons are also dyslexic, Bill learning to read as an adult and both boys had a hard time getting through their school years. The older son now has a degree in computing and is working in London, the younger is in the Royal New Zealand Air Force training to be a crash fireman. Has anyone else been aware of learning disabilities in relation to Marfans?
Our daughter now 29 has had quite a bit to cope with having two brothers that needed so much extra time and effort spent on them. For me too there have been frustrating times and when we first heard of Marfans which was when our youngest was 2, I had a real fear of losing my husband. Bill is now 58 and so far has not shown to have heart involvement although he has had a couple of unexplained heart 'turns'.
Helen Kingston
Added November 14, 1997
Allyson Klabe, Wilmington, Del.
Hi, i am a 19 year old college student at the University of Delaware and i have Marfans. I was diagnosed at age 7. My condition, i feel, is not bad at this point in time. I've had no surgeries, just many tests. I have never met anyone with Marfans, because no one in my family has it. I am just trying to find out all I can, so email me!
Added November 14, 1997
Bruce Klein, Hanover Park, Ill.
I was diagnosed in 1982 and had emergency surgery to replace my aorta valve and part of my acending aorta artery. Prior to this surgery I had been operated on for hernia's, kidney. Last year I was operated on again for further disection of my acending and decending aorta. I am also active as a director of the Northern Illinois NMF Chapter if anybody has any questions regarding our chapter please e-mail me or call our chapter phone # 847-292-9045 and leave us a message and we will be glad to respond.
Added March 11, 1998
Jason Knauf, Charlotte, NC
I am 24, and was diagnosed with Marfan's when I was 15. Until recently, my doctors have been less than informative, so I turned to the internet for info. What I have found is an amazing amount of technical information, but i'd like to talk to someone my age for some practical advice. It looks like my Marfan-related problems are just beginning, I had a spinal fusion last year, and last week learned that my aortic root is dilating (it's at 4.5cm now). I'm also having trouble dealing with being in this physical condition at so young an age! If anyone is interested in talking, please drop me a line......
Added January 19, 1998
Ruusa Koskinen, Pieksämäki, Finland
First, my english is worst. I have marfan. I was about 3 years when it diagnosed. My mum died heart problems 1994. She had marfan too.
Jesus bless you
Added October 15, 2001
Kris, Pennsylvania
Hi my name is Kris. I'm a female who is 35 years old.
I was diagnosed with Marfan's Syndrome when I was 11 years old. I had extremely bad eyesight at a very young age but nothing else was detected. It was only sometime later that the doctors discovered a heart murmur. Still time went on and our family doctor sent me to a Cardiologist who told my parents I had Marfan's Syndrome. My whole world went upside down. Things I was used to doing (physical activity) came to an abrupt stop.
I had dislocated lenses, but have had surgical implants sewn into my eyes in 1999 & 2000. My vision went from 20/200 to 20/40, NOT BAD!! Now I just wear light prescription glasses. When I was 17 I kept getting Spontaneous Pneumo Thorax in the right lung. I had the lung corrected, then the left side started shortly after. It was corrected also and I never had a problem since. I also have Mitral Valve Prolapse and the Aorta is slightly enlarged. This is being watched by my Cardiologist. I must say I'm not too thrilled with facing a heart operation. No one in my family has this condition. I have NEVER met anyone with Marfan's or ever spoken to anyone with Marfan's. It would be great to be able to converse with someone that has the same condition as I do.
E-mail me at iroqu0is@losch.net