Marfan Contacts P

Ed Page
Hi, I'm 20 years old and was diagnosed with Marfan when I was 8. I've had three Marfan related surgeries and will be having at least two more in the next few years.

I would love to talk to anyone about Marfan or life with Marfan. I am the only one in my family who has it.

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Sharon Page
Hi, my name is Sharon. My 16 year old son Bobby was just recently confirmed to have Marfan's Syndrome. I say *confirmed* because I was told there was a possibility of Marfan's when he was 5. He is 6'4" tall & weighs 132 pounds. He has many problems associated with Marfan's, including Mitral valve prolaspe, an enlarged aorta (3.8cm), scoliosis, joint pain, flat feet, a very high palate...ect, although at this point his eyes have not been affected, except for a slight astigmatism. We would love to hear from other Marfaners!
Contact us at

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Pam, Upper Peninsula of Michigan
Hello
My name is Pam and I recently turned 40. I am 6'6" which was expecially difficult to deal with when I was younger and am married--no children as I know the possible consequences of passing marfans on and risks to my own health. I have often wished I had had a child anyway but know I won't. I was diagnosed with marfans at 3 yrs of age but always thought it was the name for what was wrong with my eyes until reading an article in Good Housekeeping magazine at age 26!! I then had further tests and found out I do have MVP but nothing serious. I have an annual echo done and last yr had an episode with arrythmia that led me to taking a beta blocker which has really helped. My main problem has been my eyes--dislocated lenses and I am about to have the lenses removed and then will wear contacts and glasses to correct my vision. Would like to hear from anyone who has had their lenses removed to tell me how that went. Would also like to hear from anyone with marfans who would like to correspond. I have felt lonely with this disease many many times and have never met anyone with it. I am the only one in my family that we know of who has marfans. Please write!

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Wendy Papenberg, Des Moines, Iowa
family history of marfans syndrome. just want to get as much info as I can before our my brother and I diagnosis this summer.

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The Pass Family, Toledo, OH, USA
HELLO I AM 21 AND HAVE KNOWN ABOUT MY MARFANS SINCE I WAS ABOUT 9. I HAVE NOT HAD ANY SERIOUS PROBLES FROM THE DISEASE BUT I KNOW IT COULD HAPPEN AT ANY TIME. MY FATHER ON THE OTHER HAND IS 46 AND HAS HAD PROBLES FOR A LONG TIME INCLUDING VALVE REPLACMENT, CARDIOVERTION FOR IRREGULAR HEART BEAT, AND PROBLEMS WITH HIS FEET DUE TO BONE STRUCTURE. MY MOTHER IS SCARED OF THE DISEASE SINCE WE KNOW IT COULD TAKE EITHER OF US. I AM GETTING TO THE AGE WHERE I AM THINKING OF HAVING CHILDREN AND HAVE HEARD THE STORIES OF WOMEN WITH MARFANS AND CHILD BIRTH. PLEASE FEEL FREE TO E- MAIL ME WITH WORDS OF WISDOM, HELPFUL INFO, OR IF YOU JUST NEED TO CHAT.

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Patty -- Oakland, Calif.
Hello, My name is Patricia but my friends call me Patty. I was diagnosed with Marfan Syndrome when I was three years old. When I was young, all my so call friends use to make fun of me and call me names. I was always left out because I was the weird one. I was too tall and too skinny for anyone. Now, I am 19 years old and I live a very happy life. I do not consider myself as being real tall (5'7). Boy, did I gained weight. Compared to how I was, now, I have a normal teen body. I am not big, but I am not skinny. I only have a Scoliosis surgery, which is no bother for me. I wear normal glasses. My problem is my heart. I am very afraid that someday something might happen to me. Luckily, my aorta has not widened yet. I know it's very hard to live with Marfan, but somehow we have to adjust IT to our lifes, not let IT adjust ITSELF to OUR lifes. WE are NORMAL. Who cares what others say, as long as WE live OUR life how WE want to live it. WE just have to take good care of ourselves. I would love to hear from anyone with Marfan and how they are succeeding in life in. Please e-mail me. TAKE CARE ALWAYS!!

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Patty, Indian Head, MD
I just buried my son this past weekend. He had a massive coronary which was due to Marfan Syndrome. He was 36 years old. I also buried his sister three years ago, and her death was also caused by Marfan Syndrome. She was 31 at the time. Their father passed away also from Marfan at the age of 34. My son was denied disability for the disease in 1992 and after three tries he returned to work because he was embarassed to have his mother and stepfather support him. We again tried to get him disability this past October, because he had suffered another heart attack in September and on March 3, 1999 we rec'd a ltr from Social Security denying him disability. On April 12th he passed away, but according to Social Security this was a man who could work. I have lost three very kind, loving people to this disease.

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Peio, Ustaritz France
Hello, my name is Peio.I am a 18 years old male.I live in France.I have all symptoms of Marfan (but i am not very tall).I really want to communicate with you in order to talk about Marfan and anyelse with anybody.
Sorry for my english.
I hope an answer on peio.sallaberry@caramail.com
Bye!

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Michelle Peos, Western Australia
Im a 25 year old female who has Marfans Syndrome, I am the only one in my family who has this disease. I found out when I was little that I had Marfans. I would also like to get to meet/know some people who have Marfans Syndrome
Msedusa7@hotmail.com

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Tanya Piasentini, Mississauga, Ontario, Canada
I'm the only one in my family with Marfans, I guess I won the lottery or some thing. (Ha) I'm 18 and have one brother. I haven't gone to a support group since I was about 8 or 9 caus they always made me sad. I am going to start getting more involved with it now. I was diagnosed at 5 and it was suspected from birth caus I was 22 inches long. I am very skinny (5'9 and 105 lbs.) and have a club on yahoo for skinny people called Mega Stringbeans!

http://clubs.yahoo.com/clubs/megastringbeans

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P. Pratt, New York City
At 31 I have just been diagnosed with Marfans. I stand 6'1" which is way above average for females...and I have always considered my lanky stature a positive feature! I had never heard of this syndrome.. until recently I was suffering from heart palipitations ("hypertension") that lasted 6 hours. At the time I thought I was having an attack.

The cardiologist I saw was well informed on Marfans and told me I was a "textbook" case. He was very supprised that no one had ever detected it before. So was I. My question is, how subtle and how extreme can it take effect on the body? I do not feel deformed in any way on the surface, and yet I don't want to be foolish and ignore other warning signs of connective tissue malfunctioning. Presently I am on a mild dose of Beta Blockers, and I was told that I do not have to keep taking them forever. I would really enjoy corresponding with someone informed who has a positive take on the Marfan Situation.

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Carol Pijoan, Denver, Colorado USA
I am a 58 year old female with Marfans. I have had two children both of whom have symptoms of Marfans. At the moment I have been diagnosed with osteporsis and am wondering if this is common with other Marfan folks. I am a RN specializing in Holistic Nursing and Therapeutic Touch. Want to learn as much as I can from others. Thank you.
Carol

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My 4 year old son has Marfan's. We think his father has it as well, but he will not go in for any type of testing. We know that my ex-husband's father died of heart related problems, no specifics just at age 40.

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Lin Purnell, London
Greeting to you all,
My name is Lin I am 26 years old and suffer from Marfans I found out a couple of years age but have only recently started te research into it. Like many of you, both my lenses have detached and I now wear glasses, this I admit is a pain but it stops me walking into anything! I would love to chat with any one who suffers form Marfans and has had children, I am planning to have a child within the next year and would welcome any advice or warnings!
Take Care,
Linnylin