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I Have Marfan Syndrome

This group is for anyone who has or supports someone with this disorder. 92 People

    How Marfan Syndrome Has Led Me To Study Sociology... - Hello! My name is Sarah and I am a 24-year-old woman who was diagnosed with Marfan syndrome when I was very young. I am...
    SarahMc67 SarahMc67 22-25, F May 24, 2012

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    I Stopped Crying. - Hi. I'm 13 years old and I found out I had Marphans Syndrome last weeky. I was at the doctors with my mom getting the test results. I wasn't hopeful, I had...
    Eva99 Eva99 13-15, F 1 Response Jan 26, 2013

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    My Life With It - All my life I knew that I was not normal at all. I could never play sports at all. I also couldn't dance any more. That is one thing that I was never good at all...
    ac1986 ac1986 26-30, F 1 Response Sep 11, 2011

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    My Marfan Story - Heads up to anyone reading this...its a long story. Hi my name is Tiffany Wolfe I am a 26 year old Mother of one beautiful (adopted) daughter and I have Marfan...
    twolfe85 twolfe85 26-30 11 Responses May 2, 2012

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    Marfans Syndrom To Me -          My father had marfans syndrom. My mom had twins. It was a 50/50 chance that one of us would get it. I was...
    acjf acjf 22-25, F 2 Responses Aug 9, 2010

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    I Knew Befor The Doctors Knew - Im 19 and was told I had marfans syndrome when I was young by my parents I wasn't officially diognosed till I was 13 .i remember when a nurse first...
    Minwell Minwell 18-21, F 1 Response Jul 19, 2012

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    Next In Line - At first i live in belgium so forgive me for any mistakes.I have known for a long time what marfan is and what it causes,my grandmother had it,my mother and now...
    illiona illiona 26-30, F 2 Responses Feb 16, 2008

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    Tall Trees, Catch The Most Wind... - I grew up as the "black sheep" of the family.  I was always branded as the "naughty" or "complaining" one as I would always try to avoid...
    TeryMA TeryMA 26-30, M 1 Response Oct 19, 2010

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    Little Things - Arrrrrgh... No I'm not mad, well maybe I am... Ok... Let's just say slightly upset. You see,  My niece is getting married this Saturday. It's going to take place...
    Bethsalomon Bethsalomon 41-45, F 2 Responses Mar 6, 2012

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    Living With Marfans Syndrome.... - Gday all, im located in australia, i was diagnosed with Marfans Syndrome at the age of 22, I didnt listen to my Local GP back then, as i felt...
    auzzieguy32 auzzieguy32 31-35, M 2 Responses Oct 21, 2012

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    I Have Beals Syndrome - Hi! My name is Sarah and I have a rare genitic mutation called Beals Syndrome. It is brother to Marfan's Syndrome.My Beals is the most extreme type one can...
    InvisibleSarah InvisibleSarah 19-21 17 Responses Mar 7, 2008

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    My Own Experience - I have known I have Marfan Syndrome for as long as I can remember. I was diagnosed at 6 years of age. I am 5'10" and have the long extremities. I also have...
    Bethsalomon Bethsalomon 41-45, F 2 Responses Feb 3, 2012

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    One Squiggly Line Too Mny! - I'm a little worried. Lately I have been seeing squiggly lines on my left eye. This is something new to me. I have always had vision problems due to...
    Bethsalomon Bethsalomon 41-45, F 5 Responses Feb 4, 2012

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    I Have Short Stature Marfan's Syndrome - I'm barely 5'2 the height fluctuates between 4'4 to 5'2 , i have a pigeon chest, a hernia heart murmur, scoliosis, spina bifida kyphosis of...
    peachfuzz68 peachfuzz68 41-45, F 4 Responses Feb 18, 2012

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    Not Going To Let It Get Me Down - I hate people that feel bad about them selves. I used to be like that until. I heard something that changed my life. Instead of saying why me. Why...
    ac1986 ac1986 26-30, F Aug 28, 2011

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    My Story - My story with Marfan Syndrome started out when I was 17 years old when I was inconclusively diagnosed with it. When I was 21 I was officially diagnosed with it. I have...
    maninblack85 maninblack85 22-25, M Jul 11, 2011

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    They Could Cure It If They Wanted To! - i've seen a lot of doktors here,all they said they couldn't.But then i saw a chemist one time,he worked for a big pharmaceutical company...
    illiona illiona 26-30, F 1 Response Feb 18, 2008

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    Not Letting It Get Me Down - I don't like to see people that feel sorry for them selves. For I kind of used to be like that. Until I heard something that changed my life. Many...
    acjf acjf 22-25, F 2 Responses Aug 27, 2011

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    Getting Surgery This Summer. Someone Help. - Hi. I was diagnosed very recent and ....well I'm getting surgery this summer. It's the Nuss Procedure for my Pectus Excavatum(indent in...
    Eva99 Eva99 13-15, F Jan 26, 2013

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    My Brief Story - I had scoliosis when I was 8 years old, when I had the surgery my curve was 139 degrees’, and I was 15. You are wondering why I take all that time. It&rsquo...
    bellelune bellelune 18-21, F 4 Responses Dec 16, 2010

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    Marfan And Sick Sinus Syndrome - My name is Katie, i'm 23 years old. when i was 7  had a mild heart attack and was later diagnosed with marfan syndrome. At the age of 10 i...
    ravenwoodawgk ravenwoodawgk 22-25 2 Responses May 16, 2010

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    The Meeting - I met with the surgeon today. He said that since I have no symptoms I can choose the date of the operation but that I have to do it within the year. It's important...
    Bethsalomon Bethsalomon 41-45, F Feb 7, 2012

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    Growing Up With Marfan Syndrome - Hi, my name is Matthew and I am 26 years old. When I was born I was diagnosed with Marfan Syndrome. I found it really difficult growing up because...
    MattSte86 MattSte86 26-30, M 1 Response May 27, 2012

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    I Do Not Have Marfan Syndrome, But My Son Is Symptomatic Of Marfan Syndrome - A few months ago it started off with Pectus Carinatum with my 14 yr old son, but things have taken a...
    robinbengtson78 robinbengtson78 31-35 1 Response Sep 8, 2011

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    Walking In The Dark - I joined Ep over a year ago now after i was told my son has Marfans and i was looking for support groups/information about this syndrome Wow what a roller...
    gypsymae gypsymae 31-35, F 5 Responses Jan 20, 2011

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    I Have Had Two Eye Operations - i was born with marfans all my family have got it its genetic and got bad eyes i nealry went blind when i was 11 so i had a operation and i had a...
    kirsty2k8 kirsty2k8 16-17, F 1 Response Sep 4, 2008

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    I Have Marfan's - I was diagnosed with marfan's when I was 11 years old. I am now 32. Ii have 3 children and 2 of them have Marfan's. I have had lens replacement surgery on both of...
    jrogers78 jrogers78 31-35 1 Response Oct 21, 2010

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    Bulking Up Is Tough - Hey guys whats up! I'm not a full blown marfan, but I have the flat feet, elongated limbs, and I used to have the grown-in chest which repaired itself over...
    hcom hcom 18-21 2 Responses Apr 21, 2012

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    I Will Be the Last. - No more.I have a chance to say that now.My mom and grandmother didn't.My grandmother lived in an age where they dind't knew what marfan was.She had children...
    illiona illiona 26-30, F 5 Responses Feb 17, 2008

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    I Monster -     Since I was a little kid I was always looked upon as "different" from everyone else. Even my own family regarded me as "the monster."  When ...
    jonathanz64 jonathanz64 41-45, M 4 Responses May 29, 2010

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    What Should I Do...!!!! - Hi der .. I m 23 nd last year came to know abt this marfan's syndrome. I visited a doc for viral fever nd he noticed some rare symptoms in me. He adviced...
    throughhell throughhell 22-25, M 1 Response Mar 25, 2013

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    I So Have It - My father had it and so did his mother. I don't know where she got it from. I also found out that I am related to Abraham Lincon. Many people say that he had it. I...
    acjf acjf 22-25, F 1 Response Aug 20, 2011

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    Marfan Musician - I was diagnosed with Marfan when I was 10 years old, but that didn't stop me from playing the kind of music I love. I have had two open heart surgeries already...
    raygungirls raygungirls 31-35, M Aug 9, 2008

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    Marfans Sindrom - I really do have it very mager case
    themooster themooster 22-25, F Aug 20, 2011

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    My Poor Son - Let me start by saying i dont have Marfan Syndrome but my Son does.We have no family history with him it just came out of no where and im so scared for him. My Son...
    gypsymae gypsymae 31-35, F 10 Responses Jan 16, 2010

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    My Son Has Beals Syndrome -   Hello to everyone. I am new to this site and have been looking for something such as this site for support and information from others about living...
    lepetitenurse lepetitenurse 46-50 1 Response Feb 22, 2012

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    My name is Kamilla and I have Marfan Syndrome. I was born blind in Ukraine in 1993 and my parents had no idea that I was blind until they took me for a visit to the doctors in...
    kamyrawr kamyrawr 18-21, F 1 Response Mar 15

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    The Date - I've gotten over my disappointment of not being able to qualify for honor role. At least I was good enough to be recommended and after all my health is more important...
    Bethsalomon Bethsalomon 41-45, F Feb 9, 2012

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    Marfan Syndrome - I have Marfan Syndrome .Most people are not very aware of this genetic disorder .As it is not very common.Or people have just not been diagnosed with it .I doubt...
    BeckiTerV BeckiTerV F 2 Responses Feb 15, 2008

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    One Day At A Time - Hi, I'm a 16 year old male that was diagnosed with Marfan's syndrome. Ever since I was really little(around 3-4), my parents started noticing that there were...
    bdallas14 bdallas14 16-17, M 6 Responses Jan 18, 2010

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    Hi, my name's Rachel and I have Marfan's Syndrome. My father did as well and my brother is living with it too. While I was growing up I thought it was normal, having the same...
    Rachelmm Rachelmm 18-21, F 1 Response Jan 25

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    Living With Marfan Syndrom Is Not Easy But It Can Be Done! - Hello, my name is Yanira. I was first diagnosed w/ having Marfans at age 29 (in 2005). one day at home I developed a...
    bonito1 bonito1 36-40 Jun 12, 2012

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    To Tell Or Not To Tell... That Is The Question - I just finished speaking to my mom on the phone. She is in the Dominican Republic. She was asking if I was going to my neice's...
    Bethsalomon Bethsalomon 41-45, F Feb 5, 2012

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    I Was Diagnosed Earlier This Year. Lots Of Questions! - So, I'm 6 feet tall, and sadly I'm still growing at 21 years old. I don't have any heart problems yet, except for an...
    deleted deleted 26-30 3 Responses Dec 12, 2011

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    I Never Thought It Was Very Serious-i Was Wrong. - I don't know if I have Marfan's Syndrome, but my brother was diagnosed when he was 3.  He died two weeks ago from a ruptured...
    Potential Potential 22-25 4 Responses Aug 17, 2009

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    Just Another Story - Hey you guys! I don't have to tell you how living with a disorder as marfans is a constant struggle! Often I sit down, watch life go by and think to myself...
    refusingtogiveup refusingtogiveup 18-21, F 2 Responses Feb 7, 2013

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    My Marfans - Nobody in my family has marfan's syndrome, or even anything close to it, except for me. I was diagnosed with marfan's syndrome when I was very young.  As I grew...
    lianer412 lianer412 18-21, F Sep 21, 2008

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