Heather A
I am a 16 year old girl who has just found out she has marfans fev5
Added September 22, 2001
Shaun A, South Africa
I am new to the marfan internet contacts but would really like to correspond with others who do have this disorder. I am 17 years of age and was diagnosed with Marfan about 6 years ago. Most thingd have gone well for me so far, probably because mine was not hereditary but just one of those freak mishaps. As I said above, i dont really get to speak to anybody else with the disorder and hopefully I can learn more about others through this as well.
Hope to hear from a fellow Marfan soon!
Shaun\South Africa shaunlyle@webmail..co.za
Added March 14, 2001
Allison, Richlands, Va., USA
i have marfan and cannot find a doctor that will listen to me or answer my
questions about marfan syndrome...i have a five year old daughter and cannot get a doctor to check her for marfan. alitbird
Added March 6, 1999
Phillip & Sara Alphin, Williamsville, Illinois
We found out about Beals when our first daughter was born in `81. We lost her after 13 days, our second daughter shows no signs of it!! But our son P.J. born in 84 does have Beals and has had a number of surgeries to deal with it. My wife age 45 has a mild case of Beals,she had been misdiagnosis at birth. thanks please send e-mail have been case studies and meet Dr. Beals. thanks PHIL resale
Added November 26, 2000
Christine Alzapiedi, Garnerville, NY
I am the only person in my family diagnosed with Marfan. I was diagnosed at the age of 5. I am now 23 years old. Bella8950
Added September 9, 2000
Amanda, Queensland, Australia
Hello everyone my name is Amanda and I was diagnosed with Marfan's Syndrome at age 13 when my knee's and shoulder's wouldn't stop dislocating. It was thought that I might have Marfan's as I showed the physical characteristics such as,long fingers and toes, being tall and skinny, as well as having extremely flexible joints. After many visits with various specialists I was also found to have a curvature of the spine, prolapsed mitral valve & problems with my aorta.
I am now 28 years old and would like to start a familiy, and would love to hear from other Marfans mothers who have had children themselves, or the effect that it has had on the family finding out that your child has been diagnosed with Marfan's Syndrome.
Please contact me on my email address rastusdog
Kind regards
Amanda
Added May 3, 1998
Marianne Andersen, Denmark
Hi, my name is Marianne, I´m a 22 year old girl from Denmark. I´ve known that I have Marfans most of my life . I had heart surgery a few months ago which really scared me and I´m having a lot of problems dealing with the fact that I almost died. I would love to hear from someone who´s been in my shoes so please don´t hesitate to contact me. stigs
Added August 26, 2000
Anita
Hello All,
My name is Anita and I am 38. I am in the mildly affected class of the Marfan Syndrome. I am looking for any lens implant experiences as I am trying to choose one of the offerings. I would appreciate any information you may have to give. I would also be glad to share any information I already have. AGL4HER
Added November 15, 1999
Ariane, Belgium (French)
My son, 26 years old, is "Marfan". We knew that when he was 21. In french with "rupture de l'aorte". And now, I am surching for détails. Thank You, it's very difficult for him (and for me too). ariadna.cappoen
Added June 11, 2000
Larry Ashworth, Galt, California
My name is larry Iam 53 years of age I did not know I had Marfan's until I was 49 when I had heart valve replacement I am 6 foot 3 and 245 lbs . I have two son's the youngest with marfan's. We have two grandkids with no sign yet of having marfan.I Have other problems but do not know if they are related to marfan. Please e- mail so we can talk about them. larandjennifer
Added December 25, 1999
Susan Ball, Farmington, NY
My 15 year old son has Marfans we have just found out would love to talk to other parents who know alittle about this . susanb4
Added April 17, 2001
Ball family, New York and Mass.
My family has Marfans Syndrome and so far 2 have died from anuerisms. 3 of them have already hadgeart surgery and there are still more to go. heidiho72
Updated July 8, 2000
Lorraine & Rachelle Beaven, N.S.W. Australia
My daughter Rachelle is nine years old and has Marfan Syndrome. Rachelle has a twin brother and two older brothers that do not appear to have Marfan's. The headmaster at Rachelle's school was the first person to suspect she had Marfan's! Rachelle has all the skeletal features of Marfan's has to wear glasses, has mild scoliosis and takes beta
blockers. We try to explain Marfan's to her as best we can but not having suffered from the Syndrome ourselves it is hard to know how a sufferer really feels. We are members of the Marfan Syndrome Association in N.S.W. which is a lot of help. Rachelle is especially looking for a pen friend that she can write to. Both Rachelle and myself would love to hear from anyone who can help us with any information especially growing up with Marfan's. beavenclan
Added March 3, 1997
Hello! My name is Becky Belcher. I live in N.W. Ohio, USA. I
am 32 and was diagnosed with Marfan when I was 13, after the death of my father. He also had Marfan and his death was related to it. I am married and have 3 children. (7, 9 and 11) My two boys both have Marfan and my son Zack would like to be a pen-pal with other children who have Marfan. He is 9 and already 5 ft tall. I would also like to hear from other mothers who have Marfan and children with it. My husband and I homeschool our children and find it easier to deal with the social, (ie: unkind remarks from other
children etc.) and physical limitations, (ie: gym class, contact sports etc.) caused by Marfan. Are there other homeschoolers out there who deal with Marfan? Please write! Jesus1st
Address updated June 5, 2001
Jeanne Bellanger, Los Alamos, NM, USA
I was diagonsed with Marfan syndrome in 1986,as a result of a spontaneous pneumothorax (collapsing of my left lung). As a result, surgery had to be done because of the lung's inability to re-inflate. I believe that my paternal grandmother died as a result of complications due to Marfan syndrome, at the early age of 57. I also have one of my 3 sons that have Marfan syndrome. I also have been recently diagonsed with MS. I truly believe that my family has many genetic diseases. jbellrig
Added May 21, 2001
Beth and Bernard, Port St. Lucie, Florida
my son bernard is 15 years old and we just found out he has marfans. if there is any other parents out ther that is going through this pleae email me. thanks bethisspoiled
Added February 19, 1999
Birrer, Sartrouville (France)
I am 38 years old. my husband died 15 august 1998 at foch hospital about cerebral hemorragie. I try to talk with every body who have had the same experience.
He knew that he had marfan at 5 years old and every day he loved the live. I helped him during 10 years but marfan syndrome separed us.
I try to live without him every day, but sometimes i think it is more easy when he was with me. mpbracqbirrer
Updated November 6, 1999
Stephen Black, New York, NY
I am a 32 yo who found out when I was in my late teens early 20's. So far no problems with enlarged aorta. I'm starting to have problems with joint popping, esp. in my hips and knees. I wonder if I should be concerned about this and if there is anything that can be done, or could help (such as stretching exercises). I have many of the physical features but seem to have been spared the serious medical problems up to now. I am a musician
(keyboardist/conductor) and wonder if I would have been as good a player without the hypermobility I have. I welcome any correspondence! (Are there any others out there who are adopted like me and don't know their family history?) sblack
Added November 26, 2000
Marilee Boerger, Sheboygan Falls Wisconsin
My husband was diagnosed after having an emergency aortic root graft and aortic valve replacement. Our two sons also have Marfan Syndrome. Josh who is 21 has already under went two surgeries on his descending thoracic aorta and has had over 6 inches of his aorta replaced.He needs more surgery in the future to repair two more tears. Our 22 year old son is typical in appearence but so far is doing extremely well. It is so difficult to get
quality medical help for the men in my family. There are times when I feel no one understands or believes the fear one lives with.My husband was told he needed to have the rest of his aorta replaced but has so far declined to have further surgery. We have been told it is a lengthy and high risk procedure. Does anyone out there know of a survivor of this surgery and a realistic recooperation length? I would welcome any and all information, Thank you. Marilee mumster
Added March 19, 2000
Tom Bonay, Olympia, WA 98513
I and my two sisters have Marfan's. I had a mitral valve replaced. Experiencing Peripheral Neuropathy - any other Marfan patients have it? MRI shows the spinal cord is 1/4 the width of the average spinal cord. Is this possibly connected to Marfan's? Other than that, "it's great to be alive and helping others". tbonay
Added February 18, 2001
Carmen Bontrager, Bartlesville, OK
Hi! I am a single, 19-year old female who has struggled through a life with Marfans Syndrome. For most of my life (especially elementary and high school), I was not well-accepted because I looked different from everyone else. For one thing, most females do not grow to be 6'0" who have slightly abnormal body proportions, bad eyesight, long fingers, long legs, etc. God has blessed me, though, and has given doctors the ability to correct my legally-blind condition to vision that is decent (20/40). As I've been reading the other entries on this website, I have felt overwhelmed by the lives of others. I have never known anyone else that had Marfans syndrome, and I have longed for so long to actually get to know someone with it. I have not had it as tough as some. The only surgery I have had to go through was eyelid surgery and that wasn't too terribly bad. But I have struggled with the overwhelming loneliness. Presently, I am attending Bartlesville Wesleyan College and majoring in music education. I absolutely love it. I love music. I play flute, saxophone, and a little piano. I am currently learning guitar and trombone and am really excited about my future as a music teacher. Even with Marfans Syndrome, life is awesome when you can know that God will always be there for you! I
have known this all of my life, and it has been the one thing that has gotten me this far. But sometimes I just wish I had someone I could share my feelings with, someone that knows what I am going through. If you need a friend, PLEASE give me a holler at my email address. Because I need friends, too! I welcome ANY and ALL! carmen_bontrager
Added October 14, 2001
Mike Born, Ohio
Hi, I'm 31 years old and have had marfan's syndrome all my life. However,I was just recently diagnosed. I always knew that there had to be some explanation for my sunken chest and huge arm span. I've been fortunate enough that I haven't had to have any heart surgeries. I'm looking to learn more about marfan's and make some friends with similar experiences and stories to share Soren@avolve.net
Added July 26, 1998
Cathy Bourn, Adelaide, South Australia, Australia
Hello. I have a 4 year old daughter that has Marfan Syndrome. She had a Mitral Valve Repair. She suffers from many other common symptoms of Marfan Syndrome. I am a member of the Marfan Association in Adelaide. We are only a new group and we are trying to make ourselves known in the community. I am happy to talk to anyone
especially other parents of children with Marfan Syndrome. Also if anyone would like information about our support group please feel free to contact me. martinb
Added January 17, 1999
Barb Bowling, Newark, Ohio
I live in Central Ohio and was diagnosed with Marfans at the birth of my second child. Both sons were eventually diagnosed. One is twenty-one, and the other twenty-seven who lives in Cleveland, has had many surgeries. Currently I am very involved in the local chapter which meets in Columbus, Ohio. Always looking for new members. Trying to locate anyone connected to Tall Clubs of Columbus, so that we may join forces. Would love to hear from you regarding your experience with Marfan, especially right now any ideas on the Have A Heart campaign. WBowling
Added September 24, 2000
Graham Bridge, Lincoln, Lincolnshire, England, UK
I do not have Marfans but my wife,Liz,does.My daughter Lauren has also got Marfans but my son Dale hasnt.
Liz and Lauren were diagnosed in 92 and both now have regular checks. Lauren has just started senior school,year7,and has become inquisitive about their syndrome. We have met only one other person with marfans but unfortunately she has moved away from our area. i hope to put more detail about us another time. grahambridge
Added August 5, 2000
Charles Brown, Independence, Iowa
Hi my name is Charlie And I have Marfans. Its been hard to deal with the fact that I wasn't able to play sports. If that isn't enough Next year in 2001 I will probably have to have an aortic valve replacement. But I have learned that there are alot of things I can do to have just as much fun as any healthy person. cbrown50644
Added January 4, 2000
Steve Burnstein & Varda Livney, Israel
our 6 month old son has congenital neonatal marfan varda