Added October 8, 2000
Kathy Wall, Canada
I am a freelance writer. I am working on an article about Marfan's syndrome. I would like to hear from anyone who would like to help educate the general public about this condition. I am particularly interested in hearing from Canadians; however, any responses would be greatly appreciated. I do not have, nor do I know anyone with Marfan's. I became aware of it when I was researching Akhenaten. Since I have some experience as a health writer, I was intrigued. Any one who responds to this message will be guaranteed their privacy. Names can be changed for the article if you wish. In addition, no personal information will be shared with anyone else. Thanks for your help.
Updated February 26, 2000
Valerie Wattier, Souix Falls, SC
I am a 29 year old female. I have known I have marfans for about 9 years now. I have had two back surgeries and suffer from numerous difficulties of this syndrome. I have a strong family history of the syndrome also. I would like to talk to other people with marfans and swap information.
Added July 11, 1999
Wehtje, Nebraska
Hi...
My daughter..Age 17 and I both have marfans and would love to hear from anyone else who also has it.
Added April 29, 1998
Wendy, Des Moines, Iowa, USA
So great that there are links around like this and the support from Marfan patients is unbelievable!!! My father passed away from Marfan's syndrome, said to have an aortic dissection unknowningly at the age of 43 Thanksgiving of 1996. Now my brother age 19 and myself age 22 are about to be tested by means of a skin biopsy this June. Has anyone out there ever had this done for a Marfan diagnosis? Please email me on any other info you may be able to give me about Marfan syndrome. There can never be enough information for me. I am new to this, really...Thanks in advance!
Added February 13, 1998
Bob White, Kingston, TN, USA
My name is Bob, I am a 60 years old. I have an aortic valve replacement and acending aortic graft, and repaired decending aorta. Both my son and daughter have marfans. My son also has a son with marfans. My daugher has three children, one has marfans.
Added May 31, 1998
Eric Wika, Modesto, California
I was just diagnosed with this happy little diease. From what i have read i am scared to death and hope to find more out. The more anyone can tell me it would be greatly appreciated.
Thanks - Eric
Updated October 28, 2000
Marie Wilcox, Mt. Pleasant, Pennsylvania
Hi! Everyone!
I am a 39/f. With Marfans syndrome. I was diagnosed in 1983. My husband was active duty military therefore, over the years I have seen several cardiologists and various assortments of other doctors. Every time we move I must start all over breaking a doctor in. After our last move I began seeing my current cardiologist. He insists on me seeing a geneticist. I feel that these tests are not necessary at this point in my treatment. Has anyone else had this kind of experience? Do you feel that I would benefit from seeing a geneticist at this point in my treament? I like to hear from you.
Marie Wilcox, Mt. Pleasant, Pennsylvania
Added May 4, 2001
Katrina Wiley, VA
Hi, I need help determining if I have Marfans Syndrome. I was told at the age of nine that I did, but my parents never followed up on it. I am 24 yrs old '6 ft tall. I really dont know what signs to look for to detect the illness. If anyone could share stories or help guide me through this confusion then I would greatly appreciate it.
Added January 29, 1998
Cynthia Wiseley, Desert Shores, Ca.
Hi, My name is Cynthia, I was diagnosed with Marfans in 1989 during the pregnancy of my youngest child Aaron. We also have a daughter that is now 13 and showing some outward signs of this syndrome. I have had 2 open heart surgeries, an Aortic valve, and root replacement, also the Aortic arch and ascending Aorta replacement. These were done without the use of blood. Still have a dissending Aortic Anuerysm which I am controlling with meds. My husband thinks we should write a paper or something on my life to help others deal with their troubles. Any help would be appreciated. Please e-mail if you would like. Thanks, Cynthia
Address confirmed August 10, 1997
Hi, my name is Henry and I was diagnosed in 1982 with Marfan's Syndrome. I was not really aware of what that entailed until recently and have since found out there is no support group in Nevada. I live in Lovelock, NV and anyone interested in contacting me or getting a group together please contact me at
Added July 14, 1999
Lindsey Woodgate, Burlington, Ontario, Canada
Hi, I have Marfan's, I'm 26 and I am the only one in my family to be affected. I was diagnosed at about 8 years old in England, at that time they didn't know much what to do with me there and I thank my lucky stars everyday that my parents brought me to Canada, where I was immediately given lots of preventative treatment at Sick Kids in Toronto. I've had 5 major surgeries including the valves and aortic graft. But I still feel pretty good about things and am very encouraged by the growth in marfan knowledge and research since my diagnosis. I look forward to hearing from others about their experience and anything else.
Added April 1, 2000
Tanya Wooley-Lawton, Australia
My eldest son Regan, who is sesen, has Marfan's, contracted from his father. Unfortunately, his dad died in 1997 as a result of Marfan's.
Since I do not have the condition, I feel I am dealing "blindly" and would love some support.
Any Australian families or anyone who has some ideas, resources or information to share, please forward to me!
Added February 17, 1998
dawn wortman, lake worth, fla.
hi my husband ronnie has marfans. he was born with it. now we are waiting for our drs. to decide when he needs to have his aorta resectioned its at 5.0 . he has all of the problems. by the way hes 41. love to here from any or all of you.