Lucia Gallardo Saavedra, Tivoli, NY USA
I am a 42 y.o. female born in Ecuador. We came to the USA when I was 12. At 25, in 1983, our family was diagnosed with Marfan. One brother died at 30 y.o. in 1989. Our father died at 30 in 1960, in Ecuador. My 26 y.o. son Geoff, also has it. I've had many surgeries so far, and I am very grateful that the gods have chosen to keep me still alive and well.
Hablo y escribo español y me encantaría poder ayudarle. lucia32
Added November 15, 1999
Tom and Renita Salzillo, Ocean Springs, Mississippi US
My husband, Tom, and two sons, Wes age 23 and Michael age 14 were diagnoised with Marfan syndrome in 1989.
We recently relocated to the Gulf Coast of Mississippi from Oregon. We are interested in any good doctors who are familiar with Marfans and have seen other patients with it. We are also interested in a support group on the Gulf Coast, which could include people from Louisiana, Mississippi, Alabama and the Florida "pan handle". The population of this area is growing rapidly and there are bound to be others of us out there! salzillo
Added August 26, 2000
Sarah, Hertfordshire, UK
Hi, my name is Sarah, I'm 28 and I live in Hertfordshire, UK. I was diagnosed with Marfan at the age of 7 after my dad died aged 31. I have scoliosis and an enlarged aorta, I've been checked by doctors every year and over the last few years have realised that I will have to have surgery on my aorta in the near future. I decided to add my name on this list as I'd love to hear from anyone who has gone through the surgery so that I can get a realistic idea of what to expect. As most people probably realise, getting straight answers on Marfan can sometimes prove difficult! Also I'd love to hear from anyone who has had the operation and then had children afterwards, again what are the implications etc. I'll stalking now! so if anyone would like to drop me a line it would be great to hear from you. It can sometimes be very lonely being the only person I know with Marfan. sarahdom
Added November 8, 1998
Jennifer Saylor, Modesto, CA, USA
My name is Jennifer.I am a 24 year old female with marfans syndrome.I had surgery to repair an aortic anuerysm about two years ago.I have fully recovered and am feeling pretty good (except for migraine headaches,I am not sure if they are Marfan related or not.)Three years ago I gave birth to a beautiful baby girl.I was given a 50% chance of surviveing the pregnancy. The doctor delivered her 4 weeks early by cesarean section to avoid any further stress on my heart.It was scary to say the least, but we both came out of it happy and healthy.I would love to talk with anyone dealing with any Marfans issues.I know that sometimes it gets hard,but over all I feel I am a very lucky person living a very happy life. Sailin00
Added June 1, 1997
John Saylor
I am a 54 year old male with Marfans. My mother, her sisters, and my younger brother died as a result of Marfans. My youngest daughter had surgery to replace her aortic valve, she is 23 years old. My problems is with connective tissue that has complicated other medical problem, especially healing after surgery. Both my daughter and I are being seen at the Marfans clinic at Stanford University in Central California. I can be contacted at sailin00 http://www.geocities.com/Heartland/Hills/3845/
Added June 22, 1998
Brad Schilling, Spokane, Washington, USA
My father who just turned 60 has had several aortic related operations starting in 1978 until 1997 as well as lung, eye, kidney surgeries. He continues to fish and travel with my mom and tries to keep his spirits high. My sister died in 1986 after complications from a valve replacement surgery, she was 23. My brother was diagnosed several years ago and I have a sister that shows no symptoms. I have several symptoms but have yet been told 100% that I have Marfans. I'll be 30 this year.
To live with Marfans in your life is a test of a persons will, faith, strength and sense of family. jeffwood
Added May 7, 2000
Liza Scott, Sydney, Australia
I am mother of a 4 year old girl who has marfans, she was diagnosed when she was 2. She has all signs of Marfans. The heart, and eyes.
I would be interested if there are any other mothers out there with young children to contact me. Scotthouse
Added April 6, 2001
Penny Scott, Baxter Springs, KS
My 9 year old son has marfans and has had 27 surgerys. Just wanted to talk to someone going through the same things Thanks markpen45
Added February 25, 1999
Jan Seal, England
Hi my name is Jan i am a 32ry old mum with a beautiful
7ry son called Jack,who was diagnosed with having Marfans 18 mnths ago.This is the result of a spontaneous mutation.I have another wonderful son ,Ben aged 8yrs.
We would love to hear from anyone who is in a similar situation to us ,or anyone who would like to get in touch. Darren4
Added August 18, 1999
Andie Sells, Milwaukee, Wisconsin
I am 28 years old. I was diagnosed with Marfans Syndrome when I was three. Both my mother and I have it. Just recently, it has started to affect my health more and more. My heart is starting to notice changes and so have my eyes. The older I get the more it bothers me mentally, physically, and emotionally. andrea.sells
Added May 27, 1998
Shanon, Southwest Virginia
I WAS DIAGNOSED WITH MARFAN'S WHEN I WAS THREE JUST BEFORE AN EYE SURGERY. I HAD SEVEN ADDITIONAL SURGERIES INCLUDING VALVE REPLACMENT. HOWEVER, I GUESS I LEARNED TO LIVE WITH MARFAN'S. I HAVE A GOOD JOB, A MASTER'S DEGREE, AND A VERY SUPPORTIVE FAMILY WHO WOULD LIKE TO LEARN ALL THEY CAN ABOUT MARFAN'S. PLEASE E-MAIL ME ESPECIALLY IF YOUR CLOSE GEOGRAPHICALLY. larryc
Added May 4, 2001
Sheila & Gregg Shawen, Cordova, TN USA
While we are unaffected, both of our sons are affected by the Marfan Syndrome. Dayton was diagnosed in '94 at the age of 3 and Oliver was diagnosed as "probable Marfan" in '98 at the age of 6. srts1230
Added April 9, 2001
Drew Sheldon, Pensacola FL USA
hi there my name is drew. i have the marfan syndrome. i had my first surgery four years ago. i am 31 yrs. old. i would like to hear from others in order to share my experiences in dealing with the marfan syndrome. i would also like to hear other stories about people who have marfan syndrome. drewskydru
Added August 16, 1997
Jean Shenk
Hello! I'm a 22 year old female who was diagnosed with Marfan's about 12 years ago.my parents kept me in the dark about a lot of things and I ended up learning about a lot of things on my own in college. It would have been nice to have had all of these resources then. I started out reading from some very old books that painted a pretty grim picture of live with the syndrome. Eventually I did find some more recent literature and it has helped to relieve some of my fears. In a week I will be receiving my second pacemaker and I have to start wondering how many I can go through in a lifetime! I would love to hear from anyone that would like to talk.
My email address is shenkporter
Added August 20, 2000
Elizabeth Shinaver Fort Smith Arkansas USA
Hello i am a 24 year old mother diagnosed with Marfans syndrome as well as my 5 year old daughter has marfans . I would like to talk to others about this disease and find out as much information as is available about Marfans , and hear from others who have this and more understanding of this disease.Thankyou eshinaver
Updated March 3, 1997
Kumar Sichel
Hi, my name is Kumar and I am 18. I have marfans syndrome and would like to talk with anyone else who has it too. Please e-mail me at kumar
Added June 21, 1999
Matt Siler, Portsmouth, NH, USA
Hello to anyone visiting this site. I am a formerly very active 36 year old man who had an aortic dissection on 4/2/98 resulting in valve replacement and graft of the ascending aorta. I had never even heard of Marfan Syndrome prior to my emergency surgery and now it occupies a major role in my everyday life. As I live and learn more about this disease I am just beginning to reach out to others and look for support. I would greatly enjoy hearing from any and all about their journey and discoveries on the Marfan Syndrome. hfrrealty
Added June 3, 2001
Holly Sinco, Florida, USA
Hello, I am 21 years old and was diagnosed when I was 10 with Marfan's. I have been under the watch of a cardiologist since I was 2 and have always known of Marfan's though it has not drasticly affected my life. I would love to meet new people and share their experience and life journey as I have not met many people with Marfan's. Please write. Please do not just put me on your group email list. I look forward to making some new contacts. hollysinco
Added March 25, 1999
JoAnna Sizemore, St.Petersburg Fla.
My daughter is 12yrs. old and we found out she has Marfans when she was 3yr. she has no one to talk to about this her age that has Marfans, her father nor I have Marfans and her 7yr. old sister & 2 1/2yr. old brother does NOT have Marfans, so she feels alone. We would love to have a girl around JoAnna's age for her to e-mail and talk to. Sharon (JoAnna's mom) ssmore84
Added April 4, 1999
Melody Smith, Baltimore, Maryland
My name is Melody and I am a 36 year old mother of 4 girls. My 11 year old Brandy has just been dionosed with marfan's and I am scared to death!! I really don't know that much about it but that will change, I plan on researching till I drop! Please E-mail me with info, or support. mme4291244
Updated February 2, 2001
Connie Snyder, Kane, Pa.
Hi, I am the mother of a daughter, Jessica who has Marfans Syndrome. She is eight years old. I have done a lot of research on the subject and enjoy sharing knowledge and support with others. Feel free to write me and we can share the experiences that occur with Marfans. God Bless.
Jessica Dunkle
I am eight years old. I have Marfans syndrome. I would love to meet other kids who have it. I love pen pals. I am in the second grade. I love the Powerpuff girls, Rugrats, and other cartoons. I love to play with Barbies. I am hoping some kids will write to me.
Connie and Jessica's email address thedunkles
Added March 3, 2000
Ken Spruch, Buffalo, NY
Well it seems my grandfather had Marfan's wiche I believe he died of. My mother has it and she almost was very close to dying. her aorta burst and the sergions did not think she would make it off the operating table. That doc saved her life and if anyone in the buffalo NY area needs a great heart doc hisname is Dr. merriage. And as well me and my bro have this crap. My bro has it worse than me. The only prob ive seen for my self is I am blind as a bat and I get very stiff in my joints when i sit still for extended periods of time. I used to think I was a freak for having this but after reasearching this I found out that a lot of people have it. This is a realy big pain in the ass for me and I would like to talk to other people that have to go threw with this crap. Im 23 years old by the way Bufbandit http://home.adelphia.net/~bufbandit/
Added May 27, 1998
Jack Stamey, Hickory, NC
New to the disease, and seeking information. Skunk
Added February 6, 2000
Debbie Stanger, Auburn, Alabama
I have Marfan Syndrome. I was not diagnosed until my only child, Beau, was diagnosed at age 13. He displays typical characteristics, mine are not as obvious. stangers1
Added June 7, 1999
Stephen, Ohio, USA
I am 45 year old male who has been told 6 weeks ago that I have Marfan's and I could use a friend. I think that it was from my mother and her dad would have had marfans. I am 6'6" and have sleep depravation and 6 years ago I went into a eye doctor and he said I had a ring in my eye which he thought was cholesterol and was tested and it was normal and had not given any more thought about it until I saw a Doctor Of Osteopathic and she said the rings were part of Marfans as well as arm span is greater than height and sunked chest which I have had all my life. I may add more later. Thank you. Lonewolf
Added January 4, 1998
Hi my name is Steve I'm 43 years old and have know I had Marfan since my father passed away in 1961. I'm 6'8" and was very active in High school and collegelaying sports (basketball, volleyball and water polo). I now play golf as often as my wife will allow it. I have just finished having my second eye operation in April of 1997. Both operations were a total success and I now enjoy 20/20 vision. To date I continue to monitor the size of my aortic and the leakage of the miter valve. While the aorta is expanded to 5.8cm I have decided to wait for any surgery till it gets to 6cm size. Anyone who has had the surgery I would be interested in hearing what size your aorta was before you decided to go ahead with the surgery. crawford
Added August 4, 1998
Steve and Suzy, Brisbane Qld Australia
Steve has always been tall and skinny and apparently is 'marfanoid.' Our daughter Bonny, who is nearly 6, has the full syndrome, though having read the other messages, not to the degree of many. She was diagnosed after we sought advice on her feet. She also has myopia and aortic dilation
Bonny would love pen/keyboard friends her own age. Her little brother is very cheeky but doesn't appear to have the syndrome. smross
Added July 13, 2001
William H. Storment, Davie, Florida
My fathers first wive died with Marfan Syndrome I know this because his grand daughter (my niece) passed away this Feburary and she told me she had Marfan Syndrone. My fathers wife last name was Fortune I don't if this birth name or if she was adopted. If anyone knows of this family or anything else please let me know.
William Storment steadybill
Added May 9, 1998
Sue, Sussex, UK
Hi , my name is Sue. I knew nothing of Marfan despite being a Medical Professional ( im a Midwife ) until the day my husband was taken to hospital nearly three years ago with a dissecting aorta. Sadly I lost him to this eleven days later. Subsequently our two beloved sons were too found to suffer from Marfan. They were only 4 & 6 when they lost their Daddy (now 7 & 9 ) and have coped with so much , they both already have moderate cardiac involvement so thank goodness we know of this condition now so that can be treated as appropriate. In addition they have all the other signs between them and Alex the eldest) is due for surgery quite soon on his dislocated lens'. I would particuarly love to hear from people who are in similar situations to myself and also I would on a lighter note love to hear from anyone involved in the health service of their country aboput Midwifery abroad (particuarly in the U.S as would love to eventually move to a state that has independant Midwives and set up practice working along side other Midwives who are commited to providing such a service for women ).
Please write soon. RICHARD
Added January 8, 1998
Victoria Svensson, Sweden
First excuse my bad english, it's Swedish-inspired. I'm 27 years old and was diagnosed as a child. For the time being I'm studying system analysis at the University of Linkoping in Sweden. Three years ago I had a surgey on my aorta and had a aortic valve implant. I also have other symptoms of marfans. I'm intrested to learn more about what is happening in the medical research, and how other people with marfan "survive". vicsv597 http://www-und.ida.liu.se/~vicsv597/