Marfan Contacts L

Hi I'm a 27 yr old male with marfan I would like to know a lot more about it and also to have people to talk to about it.
david_lainey@yahoo.com"

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My name is Connie Laite and I live in Grand Falls, NFLD. CANADA. I have recently found out that my younger cousin has Marfan's Sydrome. I am an Early Childhood Educator and have never heard of such disease. If anyone can help me with my research, PLEASE write me. This would be a great help to my family and myself.
My address is
Connie Laite
29 Lincoln Road
Grand Falls/Windsor
Newfoundland
CANADA A2A-1M7
THANK YOU!!!

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Laly, Sweden
My name is Laly,I´m 23 and I have Marfan.
I´m the only one who has Marfan in my family.
I´m having a hard time right now because I´m starting to have heart problems and even if I know that I don´t need surgery,I´m a little worried.
I didn´t want to speak about Marfan before but now I think it can be good for me to speak about it and to accept it.
So I´d be really happy if someone wanted to email me!!
laly-i-goteborg@spray.se

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Eamonn Lavin, Manchester, England
Hallo there.my name is Eamonn and my twin brother who is also on this list is called Jarlath. we both have MFS and have had Aortic surgery and valves, so you can still say we are twins!. well i am 37 and married to Maureen, who is a midwife,and we have a lovely little girl called Katie aged 5. she does not appear to have MFS.But she is screend yearly. We live in Manchester England. I am due to have my lens replacied in June, so if any body can give me any information i would be gratfull. Eamonn

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Mary Lee, Clarksville, Arkansas
Hi, my name is Mary Lee. I am a 29 year old female diagnosed with Marfan's Syndrome at the age of six. I have one natural son who has shown no syptoms of the Marfan's...
I recently in April this year had open Heart Surgery in Houston Texas. I had a mitral valve replacement and during the operation it was decided I didn't need aortic root replacement at the time..... I found this to be quite terrifying, but I recovered well, and was home from the hospital after only six days.
I am very interested in meeting others who have Marfan's or a family member with this disorder. I think we all have experiences we can share and others all of us can relate too.... I had never met anyone with Marfan's until I was in Houston and then I met a mother and son who understood my fears of the opeation I was facing and this made me feel better about it. Well I hope to hear from all of you soon.
Mary Lee
or

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Jason Lentink, The Netherlands
http://www.marfan.nl/

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Tami Licquia, Springfield, Il
My name is Tami and I am 28. I am the only one in my family with Marfan. I have only had surgery for a collasped lung. I was told that it would not be a good idea for women with Marfan to have children. I now have two children that DON"T seem to even be affected. I would like to talk to anyone else that wants to chat. I have know that I have Marfan all of my life. I was diagnosied through a eye examine.

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I am Judith Reed Ligosky, and I live in Detroit, Michigan. I am a secretary in a public library. I am 46 years old. I first learned Marfan was in the family when my 23-year-old daughter died of an aortic aneurysm November 1, 1994.
or

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Hi! My name is Karen Linger. I have a 23 yr. old son, Brian Cole, who was diagnosed with Marfan Syndrome at age 5. Brian had a hernia operation at age 4, has lens dislocation and cardiovascular involvement. I have done a lot of research on Marfan Syndrome and would be happy to share the sources and information with others.
Karen Linger
1217 Kirkwall Drive
Akron,. OH 44321-1730
e-mail

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John Lister, London, England
Hi I'm John, 34, from London - I survived an aortic dissection in October '98, prior to that I had not been diagnosed as Marfan. I manage a project for the homeless and write record reviews for a London magazine.

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Eve Livesey, Brighton, East Sussex, England
Hi
Just been diagnosed as has my daughter, (brother and his 2 children yet to be seen). Live by the sea in Brighton and work as a Retail IT Consultant. Constant aches and pians but otherwise fascinated by it all.

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Willie Loh, Singapore
Hello! Let me introduce myself. My name is Willie Loh residing in Singapore and a 21 year old guy who was recently diagnoised as having Marfan's syndrome cum IBS .I had also a migraine sufferer, MVP, tintitus, RSD (Hand Injury) problem. I am now trying to get over it and was told that there are a Marfan foundation in USA. I love meeting peoples new people and please write to me about yourself. My e-mail address is

http://www.geocities.com/HotSprings/Spa/7401/HOMEPAGE.htm

Also Singapore Marfan Chapter

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Roy Long, Liverpool, England
I was diagnosed with Marfan at the age of 3 yrs. I currently work for a telecomms firm as Network administrator and would love to here from anybody with Marfan

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Lou, Pendleton, Oregon, USA
7 months and some days ago, me and my fiance had a child. My fiance had marfans, and passed away 5 days after giving birth. I would like to find out more on how I should deal with this if my infant has Marfans. Thank you for listening.

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Manfred Louwrier, Utrecht, The Netherlands
Hi, I'm a 25 year old Marfan. It was probably past on to me by my father(died at the age of 35) but I'm not sure. I have two sisters that are older than me, the oldest is also a Marfan. We have both undergone a Benthall-procedure(me age 17(acute)/she age 21). Last(August 97) year I was diagnosed(routine MRI) with an acute aneurysm in the aorta bow. I had surgery again & survived again. Now my sister has problems with her mitral valve and the doktors are not so enthousiastic to perform surgery on her...Have you got more info? Furthermore, we both have major problems with joints, back etc. The ironie is that we are now both very lucky to have good relationships and just wanting to die doesn't cut it anymore. I hope that this creates a bit of a profile.
Greetings,
Manfred

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Maria Lovelock, New Zealand
Hello,
I am a 34 year old female with Marfans. I have no heart, height etc symptoms just the dislocated lenses and long fingers and toes. I am one of 3 siblings all with the same symptoms inherited from my mother who is one of eight, four of which were diagnosed with Marfans in Ireland in 1946. I have 2 daughters of 4 1/2 and 2 1/2 years old. Neither seem to have the ocular or long digit symptoms that I have and locally have been given the all clear for Marfans.
I would be most interested to hear from anyone who like me is only affected with Marfans Ocular or anyone in New Zealand with the condition.

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Luca, PREDAPPIO-ITALY
I'm an Italian boy with Marfan syndrome,i really would like to have Friends wth my same problem!!!!! PLEASE,sometime i feel so sad and lonely /_\,SO.....HURRY-UP,write soon!!!!!
I'm sure we'll be very GOOD FRIENDS ^_^
CIAO-BYE from LUCA LEONI-ITALY