Marfan Contacts M

Mary Mac, Oxford, UK
I live with Marfan syndrome as do most of my family
mairemcsorley@hotmail.com

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Hi everybody ! I'm Joerg Mader, a 28 year old young (?!) man from Germany. I was diagnosed Marfan's back in 1972 or so, and since then have made a lot of Marfan-related experiences. (worst in '89 when I needed my aortic valve replaced very urgently due to a dissection.) I like biking and (most of all) traveling, but also reading, music, and lots of things.
So if there is something you would like to know or like me to know - this is my address

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Carla Malven, San Jose, California
I have had an aunt die from Marfans. My dad and brother have it, and I may have it. All of us have had a lung collapse (which is a symptom of Marfans.) My brother is 6ft4in, my dad is 6ft.1in, my aunt was over 6 ft tall, and I am 5ft8in. I am looking to email people who have the disease. I was surprised to find out that anyone else had it. Most of the doctors I have been to haven't even heard of it.
or

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John Mann, Colorado Springs, Colorado
I was diagnosed with Marfans 5 years ago (presently 49). I have two daughters with mitral valve prolapse (not definitively diagnosed with Marfans). I am interested in finding a doctor in Colorado Springs who would be familiar with Marfans. I went to one doctor, but he never communcated anything about my condition. He is now semi-retired and I want to find someone else. Also, I have hypothyroidism and wondered if there was anyone with a similar combination of conditions. The two medications work in opposition to each other and wondered if there is a reasonable solution.

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Marfanator, La Crosse, WI
I am an aortic dissection survivor, and was also diagnosed as not having marfan syndrome. My advice is if you are at risk at ALL, of marfan get an echo done EVERY year. I have an interesting story about this, I may post on the mailing list. If anyone wants any marfan info, or some been there, done that advice feel free to e-mail me.
uglyass_marfanscar@yahoo.com

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Maria, Buffalo, NY
I'm the only one in my family with Marfan's, and don't know anyone else with the disorder. I'm hoping to make a few online friends who share the condition. I'm 20, 6'1", and am attending the University at Buffalo.
http://www.angelfire.com/ny/amazonqueen/

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Mariam, United Kingdom
I'm a 15 yr old. I just discovered I have Marfan. I am not coping with the fact that I will live in fear of dying, dying of a bursting aorta. My brother has Marfan, he is 13 yrs old, and he has been given a tablet a day, to mantain himself. I would like to hear from fellow teens who have Marfan and I would like to know how you reacted and how you are being treated. I have researced that there is no known cure for Marfan, and because I am having to take all these stupid tests at the hospital, why? I mean there is no cure so why bother?? I find that life is very cruel and knowing that teens my age have died because of this condition.

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Marie, Yellowknife, NWT, Canada
My mother was recently diagnosed with Marfan Syndrome in the emergency room when her aorta was dissecting. I flew down to be with her and a number of her phycisians told me I likely have it as well. I live in a remote part of Canada where there are no cardiologists and very few doctors who have heard of Marfan Syndrome. I would like to hear from anyone who has knowledge of Canadian physicians with Marfan expertise. I am 32 years old.

Mark, Memphis, Tennessee
Whats up? I am a 16 year old male diagnosed with marfan syndrome if you want to chat or send me mail heres my address-

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Victoria Márquez, España
I would like to know all that you can tell me about marfan, and your experiences, because I have a niece (only 6 months) with this sindrome and in Espain there are no especialist for she.
Id love to hear from you

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Brian McDonald, Salt Lake City, Utah, USA
I have been diagnosed with marfan. And my wife and I are expecting another possible little marfinie. Life is treating me well, and we have no fears for our little one.

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Georgia McKee, Belmont, California, USA
My dad died at age 39, a sister died at age 17. I had aortic valve replacement when I was 28. I was diagnosed with Marfan's when I was 2. I have worn thick glasses since then. I have one detached retina due to an attempted operation to remove the dislocated lens. My other lens is dislocated and cataracted. I am about to undergo surgery to remove it if I can get the funding.

- My fiance saw my original entry and said it sounded quite short and angry. I didn't mean for it to sound that way. I just didn't realize this was the part that showed up on the page. Sorry. I am a chatterbox, and was trying to stick to the facts for once. I would love to hear from anyone with Marfan's, especially anyone who has successfully had a lens replacement operation. I am very scared of ending up blind since I already lost one retina. Please write soon.

- This is an update on my eye surgery. I had my eye operation on Sept. 14th at Stanford Medical Center. I could not have a lens implant, because it was discovered my retina had a tear in it. The tear was successfully repaired, and a sclera buckle was put on. I have lost some peripheral vision, but I will still be able to drive and work. I received many prayers from people on this list. I thank you all. If I had waited a few months longer I would have lost the retina and been completely blind. The lens was too mobile and was disturbing the vitreous too much. I can still have the lens implant, but I don't think I want to risk it. I am just happy to have people who really understand to talk to. So all is well until the next crisis. If anyone needs any information concering lens surgery give me a shout.
Sincerely, Georgia McKee

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Colleen McLean, Coeymans, New York
I am a single mother of 6 children, one of them having marfan syndrome. He was diagnosed at age 1 and now is almost 18 years old. We never have met, spoken to or even know of anyone with this disorder and I would really like to become penpals with another parent that has this same challenge. Contact can be made by email at mark1614 and only serious penpals please.

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"Me", Chicago
hey i'm 16 years old and i've benn born with scolosis. i don' really know a lot about it because when i was little i used to go to the doctor, but then me moved and forgot about it. now i can see that my one leg is a little short then the other. i also noticed a little hump on my back. please if you wanna talk or have a way to help me e-mail me at xtheonexxx@yahoo.com

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Holly S. Mead, Moravia, NY USA
I have Marfan's. I am 33 years old. Not many people have ever heard of it. I am tall. My arms are longer than me. I have a bad aorta. My fingers and my toes are longer than normall.
I always said I would be as normal as possiable, but lately it is getting harder. I just got married a year and a half ago and I want to have a child and i can not have one. I live in a trailer so the adoption agecny's in my area will not allow me to adopt.
I feel like I just want to give up does anyone have any suggejestions for me? i will take all that I can get. My bones are really starting to hurt and in NY SSI says that I can still work because they have never heard of Marfan's.
jchsmead@aol.com

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Richard Medd, England
I have Marfans. My son died at the age of 15 and my eldest daughter has the syndrome. My youngest daughter is OK and we have 2 great grandchildren. I have had aortic root and valve surgery and surgery for lens dislocation and retinal detachment. I am also getting a lot of aches and pains in knees, elbows etc. Is this just old age? I am 57

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Selina Meikle, Wellington, New Zealand
I am a 17 yr. old who lives in New Zealand. Marfan runs on my dad's side of the family as we all found out when he had an aortic operation about 4 years ago. My grand-father died of it and I have been diagnosed with a mild case of it. Please e-mail me if you are around my age as I would like to get some more knowledge about it.

Now an 18 year old female, studying Health Sciences at Otago University, Dunedin, New Zealand, hoping to gain entry into the physiotherapy course. I still have regular check-ups with the cardiologist to check on the condition but nothing major has happened.
or

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Art Merabian, Henderson, Nevada
I was diagnosed with Marfan's at the age of 13, that was when I just moved to US. I am originally from Russia and not one doctor in Russia knew what Marfans is back then, they probably still don't. I'm just looking for some people to talk to about how Marfans is affecting their life and how they are dealing with it, I'd prefer someone that lives in my area but anyone is welcome to email me.

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Joseph Meyer, Brussels, IL
I am a male 48 years old, I have some marfans symptoms, tall slim build, long fingers, curvature of spine, and I also have situs inversus to go along with it, i have a 20 year old daughter who has a mitral valve prolapse and a 22 year old son with a curved spine, Is there a connection with situs inversus? I would like to correspond with anyone else who may have this probelm. Also i do not know who my birth parents are and would like to know what to look for in finding their medical history. Appreciate any advice.

http://sites.netscape.net/jfm53usa/homepage

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Michael, Oregon, USA
I am a 22 year old female who probably has Marfan's even though I haven't been officially diagnosed yet. I have Mitral Valve Prolapse, subluxations in both shoulders, in addition to a pretty severe pigeon-chest and now am showing signs of scoliosis. I am interested in speaking to other young adults about how the syndrome has affected their lives, especially relationships and body image, etc.

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Michael, Victoria, Australia
Hi all. What goes on? I'm looking to get in touch with some people who I can relate to, AND who also have Marfan Syndrome (optional). I'm due for aortic/possible valve replacement in a few weeks and even though I've known about this wacky thing for 5 years or so, I guess I can admit to my growing fear now. So, to add to those who feel they can relate to a politically active fighter for social justice and the environment, a poet, an ethical conflict embattled social work student, a meditation novice and just a guy who feels lonely in this crazy woild, I'd like to hear from some supportive voices too! Besides all that, I'm a good listener, see? Speak soon.

Hi all. I'm updating my listing because I've had surgery!! What an experience! I had my aortic root replaced but was able to keep all my valves so I feel very lucky. The operation went very successfully too. There were a few ups and downs but all in all I'm feeling healthier and stronger by the day. I really want to talk to both those who've been through the surgery and those who are damned scared of what's coming up for them. Besides having Marfan Syndrome, I'm also looking to get in touch with some people who I can relate to. So if you feel you can relate to a politically active fighter for social justice and the environment, or a poet, or an ethical conflict embattled social work student, or a meditation novice or just a guy who feels lonely in this crazy woild, I'd like to hear from you! Besides all that, I'm a good listener, see? Speak soon

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Michael M, Port Charlotte, Florida, USA
My name is michael
i live in florida. i am 42 yrs. and have "marfan like" symptoms. when i was 27 (1983) i had an anuerysm in the ascending aortic artery that disected. i underwent emergency surgery and they repaired the artery with a nylon mesh. because the anuerysm went undetected until then, it grew so large that it damaged the mitrol valve, which then had to be replaced. i was in a coma for 12 days after. when i woke up, i started hearing words like marfans syndrome for the first time in my life. up until then, i just thought my legs and feet etc. were messed up. i have pretty much ignored the syndrome since then. (just call me MR. ostrich) at this point in my life, i feel the need to know more. i would be more than happy to correspond with anyone about m.f. sharing experiences would be mutually benificial. contact me at

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Michelle, Northern California
My name is Michelle, I am researching marfans syndrome in loving memory of my friend David Memmott. He was diagnosed with marfans. I would appreciate any information you could send.

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Michelle, California
I am 28 and a mother of 2 young boys. Just this past week I was told that I have Marfans (no prior family history) Now I am trying to get as much information as possible. I have an appointment to meet with a geneticistin regards to my sons, and I would love to hear from anyone who has ever been. I was also very physically active and would love to hear from anyone on how this changed their life as far as that goes. thanks

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Adelaide Miles, Hobart, Tassie, Australia
Hi. I'm Adelaide and I was told I had marfans at the age of four. I wear glasses and i have flat feet and i'm having surgery for scoliosis later this year. I'm 13 years old and I'm the only one in my family who has it. bye.

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Jennifer Milinovic, Redlands, California
My name is Jenniferand I was diagnosed with Marfans last year. I am six feet tall and usually weigh between 115 and 120. My symptoms include problems with my vision, chronic pains in my joints, and due to very low blood preesure, I pass out alot. My concern is about pregnancy and marfans. Does anyone out there have any info on the risks involved? Let me know!

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Sharon Miller, Fayette, OH
I have a 12yr old daughter who was diagnosed with Marfan about 5 years ago. Although it can't be proven today, her father (who passed away from an aortic aneurysm at the age of 46) grandfather, uncle, and great-grandmother probably all had Marfan but the lack of knowledge about Marfan back then prevented early detection and treatment. Living in a small town, there has been no one who understands what causes a 12yr old to be 6'4" tall yet unable to play basketball or volleyball. We would love to communicate with those of you who understand what we're dealing with.

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Sue Miller, Cincinnati, OH
Greetings! I am a 44 year old mother of two who has a severe case of Marfan Syndrome. Luckily for me, I did not know I had a problem until I had given birth to two absolutely perfect children. Two days after the second child was born, my aorta ruptured and I had the first of three open-heart repair jobs. All that has taken place over the last 16 years. I would love to hear from other Marfan patients - I'm retired and have plenty of time to chat. I also have some concerns about some new symptoms I seem to be developing and would like to compare notes with someone else.

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Linda Mills, Wellington, New Zealand
Hi there, I am 34 years old and was diagnosed with marfans at the age of 10. I am the only member of my family that has marfans. I have had surgery on my aorta as it disected in 29/9/92 - 9 years ago. My cardiologist told me he has never seen an aorta as tissue thin as mine and I am lucky to be here. I am not overly tall at 6 foot but still a lot taller than many females. I have all of the usual characteristics, long and spindley limbs, bad eyesight -14 in my right eye and -11 in my left - it is a struggle sometime just being able to see things even with my glasses or contact lenses in. I am also pigeon chested. I would love to have some contact with other marfans sufferers. I feel that I am all alone over here as I don't think that we have a support group that is up and running but I am sure that there are others who have marfans also here in NZ or anywhere else for that matter...
I look forward to talking with someone soon.
Best regards
Linda Mills, Wellington NZ I
spiebird@xtra.co.za

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Missy, Americus, Ga.
Hi! I'd love to talk with anyone who has Marfan's. I was diagnosed when I was a young child, thankfully. I'm 35, married with one son who was blessed and does not have Marfans. I'd love to share conversations with others that suffer from Marfans that could be a source of friendship and support.
Gods Love,
Missy mwiggins@magnoliamanor.com

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Janel Mobley, Fort Worth, Texas
Hi everyone - It is so great to finally hear other words of people just like me that have fought through this mystery. For the longest time I felt like the only one without sounding selfish. It is just so great to know that there are friends out there or I feel like you are all my friends even though we've never met. My story on Marfan's is pretty basic I guess. I am now 23 and was diagnosed with Marfan's when I was 12. I have all the symptons, the sunken in breast bone, high arches, severe near-sightedness, I have had two spinal fusion surgeries (upper & lower), mitral valve prolapse, & aortic dilitation. I thank the lord everyday that my heart is not as severe as it is in other cases. I think the back surgeries alone were enough for me. So far I am the only one in my family who has this disorder. My brother is not affected.
I am currently attempting to get a DNA test done to see if I carry the gene for Marfan's so that I can decide if carrying children is in store for me. I love children!!
If anyone can help me, I do have one question that doctors cannot seem to help me with. I think only Marfan carriers can answer this. Does anyone ever have a achy feeling in their heart and sometimes it is a piercing feeling also. I would just like to know if anyone has an answer to that one. Sometimes it scares me but my doctor assures me it is nothing to worry about. Anyway, any help at all would help me feel better. I would love to hear any stories that any of you have. Please e-mail me!!!

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Evar Mohan, Gauteng, South Africa
I'm in university now, and have known I had the syndrome for a couple of years... It was first diagnosed when I was in high school. I'm happy to say that I haven't had any serious difficulties up to this point, and still don't, but I'm rather concerned about the "genetic" implications of the disorder later on in life...

Well, I'll try and keep this under the carpet for now, there's life to be lived!!, but i'd like to keep in touch with others in the same position, cause it's hard to find another tallie around this place (1 in 10000), or something like that, which I found out surfing a minute or two ago.
I appreciate the website...
Thanx
Evar Mohan

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Samantha Molnar, Clarksburg, OH USA
I am 13 years old and I have the Marfan syndrome.
I was told I had marfans when I was 5 years old. I have had eye surgery and back surgery for scoliosis. I know some day I will have to have heart surgery.

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Monica
My name is Monica and I have Marfans was diagnosed at age 22 in 1986, i am now 35 with a four year old daughter. I am interested in talking to anyone with Marfans, and if there is anyone that lives in the Bronx, NY i would to hear from you too. Everyone is welcomed.

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Monty, New Zealand
I am a 27yr old mum with a 4yr old son diagnosed with marfans at 2.He has had both lenses removed already and has severe dialation of the aorta and mitral valve prolapse,aswell as all the phsical characteristics that come along with the disorder.Never heard of it until now and would love to hear from anyone with marfans or a family member.Its a scary thing to deal with...I look forward to hearing from you!!!

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Steve and Maritza Moore, Tucson, AZ
My husband, Steve has Marfan's and I just found out that my 5 yr old son does too. I was wondering if anyone can collect disabilty for this. My husband used to work in physical labor jobs, but now cannot because of his back. He is not trained for anything else, and has had trouble finding work for about 3 years.
angelsteps78@yahoo.com

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Michelle Moyer, Santa Monica, California
I was diagnosed with Marfan Syndrome three years ago. I am married and have a ten-month old son. I am considering having another child but am well aware of the risks of having this disorder and becoming pregnant. I also know that there is a significant probability that my children will inherit the disorder. I look forward to learning more about the disorder and talking to others about it.

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Thomas Mumford,Coolah, New South Wales, Australia
My name is Tom Mumford. I am 34 years old and have had Marfans since I was born, but found out when I was 12. I have a son, 8 and a daughter 6. My son possably has this, my daughter looks to be fine.
Any body with more information, please contact me.