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I Have Marfan Syndrome

This group is for anyone who has or supports someone with this disorder. 110 People

    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 time. Let me tell you it really sucks feeling like this tall,lanky, weak person. Tried a lot of things to gain mass, but...
    hcom hcom 18-21 2 Responses Apr 21, 2012

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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 asked if I had been diognsed by it when my parents told them I hadn't and the nurse getting mad that I hadn't. but they knew because...
    Minwell Minwell 18-21, F 1 Response Jul 19, 2012

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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 with Beals syndrome. I have a son that is 21 years old and has Beals syndrome. He was diagnosed at 3 wks of age and at that time...
    lepetitenurse lepetitenurse 46-50 1 Response Feb 22, 2012

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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 disease as a parent when I learned about genetic traits in school. But over that past several years, all I found in support...
    Rachelmm Rachelmm 22-25, F 3 Responses Jan 25

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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 wedding this Spring and I told her I was not. She wanted to know why. I told her a story which was partly true. I don't want to tell her about the growth...
    Bethsalomon Bethsalomon 41-45, F Feb 5, 2012

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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 sudden sharp stabbing chest pain, radiating to my jaw and my left arm. I had no prior medical or family hx of any heart condition. In the ED of a near by hospital...
    bonito1 bonito1 36-40 Jun 12, 2012

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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 syndrome. I am what the doctors call a spontaneous case.There is no family history, no one in my family has Marfan...
    twolfe85 twolfe85 26-30 14 Responses May 2, 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 arrhythmia. I have a lots of the skeletal and joint/tissue problems. I'm always hurting. Everytime I move, all I hear is snap, crackle, pop. It happens in my hip...
    deleted deleted 26-30 3 Responses Dec 12, 2011

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    Well I had my first unplanned trip to the

    hospital on Saturday. Basically the heart murmur I have had for awhile finally did something bad and I ended up being wheeled into an ambulance around lunchtime because my heart was going crazy and I was on the verge of passing out. However hours later I felt fine. I explained...
    MattsShadow MattsShadow 18-21, M 1 Response Jul 21

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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 James is eleven and whilst he always looked different from other kids i didnt know why. James is 165cm tall and only...
    gypsymae gypsymae 31-35, F 10 Responses Jan 16, 2010

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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 doing physical activities and especially complain when it came to going to shops.  As a toddler, I refused to walk and was constantly...
    TeryMA TeryMA 26-30, M 1 Response Oct 19, 2010

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    How Marfan Effected My Teenage Life.

    Hi, I'm Reihanne, I'm 18 years old and the only person to have Marfan in my family. Yesterday (1 Nov. 2013) I took my back Brace off, it's been 6months now since my major scoliosis operation, my doctor told me that I could either pass away under the operation or get paralysed...
    Reihanne Reihanne 18-21, F Nov 3, 2013

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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 was put on hormones to stunt my growth (Dr's estimated I would be 6'4).  With regular check up's and monitoring I was fine for a...
    ravenwoodawgk ravenwoodawgk 22-25 2 Responses May 16, 2010

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    My Battle With Marfan's Syndrome I am a Marfan.

    . i.e. I have Marfan’s Syndrome. It is very rare and most of you reading this might not have even heard of it. I never knew that I had it till 8 years back. In 1998 I fainted and fell in the bathroom and I had undergone through spasms. In layman’s language it would relate to...
    Eddiecrow Eddiecrow 41-45, M 1 Response Jun 29

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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 have. Though I can still do every normal thing that anyone else can. But i had an 11 hour surgey on my back when I was five...
    InvisibleSarah InvisibleSarah 19-21 18 Responses Mar 7, 2008

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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 dramatically different track with his condition it all started off with unexplained cysts developing on his wrists, joint pain, odd  unexplainable things he was always bigger...
    robinbengtson78 robinbengtson78 31-35 2 Responses Sep 8, 2011

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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 that it is tested for unless you have some of or several of the physical signs or medical symptoms . I was not...
    BeckiTerV BeckiTerV F 2 Responses Feb 15, 2008

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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 older, it progressively got worse.  When I was 12, I had a spinal fusion.  At 13 I had my lenses...
    lianer412 lianer412 18-21, F Sep 21, 2008

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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 1998. "By the way, you do know that your daughter is blind right?" were the words from the doctor that my mother heard that started the discovery of...
    kamyrawr kamyrawr 18-21, F Mar 15

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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 so they could take care of her and because it was expected from them then.My mom had to work at home since she was little...
    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 I went out to play with the other kids it was only in the summertime, as I was always sickly in the winter...
    jonathanz64 jonathanz64 41-45, M 4 Responses May 29, 2010

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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 my eyes, my right has been done twice. My girls receive treatment through many different specialty clinics at a...
    jrogers78 jrogers78 31-35 1 Response Oct 21, 2010

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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 than anything else. I spoke to my surgeon's assistant this morning and the date has been chosen. I will have my...
    Bethsalomon Bethsalomon 41-45, F Feb 9, 2012

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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 chest). It's a symptom of Marphans so I thought I could post a question here. I don't exactly know how to ask this..... Look I'm really scared...
    Eva99 Eva99 13-15, F 1 Response Jan 26, 2013

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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.. "I just don't fit in and I'm tired of pretending!" I often feel like taking part in some giant play, not able to take of...
    refusingtogiveup refusingtogiveup 18-21, F 2 Responses Feb 7, 2013

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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 me to have a MRI, ecg nd echo test for my heart immediately ... I just ignored him saying that he is just kidding.. later when...
    throughhell throughhell 22-25, M 1 Response Mar 25, 2013

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    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 also a first year Master of Sociology student focusing on Health and Illness at Wilfrid Laurier University. As I will explain, these are no coincidence. As...
    SarahMc67 SarahMc67 22-25, F May 24, 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 Marfan Syndrome but this is definitely a change. I am hoping o make an appointment soon to have my eyes checked out but due to the...
    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 the spine. I was born with the (hidden) marfans, it happen to show up one yr on an xray.  when i was 16. My family knew very well that i...
    peachfuzz68 peachfuzz68 41-45, F 4 Responses Feb 18, 2012

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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 dislocated lenses which makes me legally blind. This doesn't bother me much because with contact lenses I am able to see...
    Bethsalomon Bethsalomon 41-45, F 2 Responses Feb 3, 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 invisible, i am now 32 and suffering for this foolish mistake, i used to work in a Timber Mill, Stacking timer 8 hrs a days, 5 days a week...
    auzzieguy32 auzzieguy32 31-35, M 2 Responses Oct 21, 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 I was so different from everyone else. I was a lot taller and skinnier than the other children at my school so I was always being...
    MattSte86 MattSte86 26-30, M 1 Response May 27, 2012

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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 experienced muscle pains, double joints, long fingers, being tall, etc. I have a long neck and I am easily...
    maninblack85 maninblack85 22-25, M Jul 11, 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, and that was right before I really started to play. I am in a Hard Rock/Metal group called The Raygun Girls. ...
    raygungirls raygungirls 31-35, M Aug 9, 2008

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    Hi there. Since I was born I have been

    diagnosed with marfan syndrome. Little did I know, being an infant, I was on the verge of having many issues in life. They may not have been too crazy and I understand there are a lot of people who have it worse, but it still felt difficult. I grew up walking with braces, being...
    ChrisSFTY ChrisSFTY 18-21, M 2 days ago

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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 the one  that got it. I hav ehad it for 24 years now. My father did hardly any thing with me. He was affraid that he...
    acjf acjf 22-25, F 2 Responses Aug 9, 2010

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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 passed the clinical exam. The one who really wanted me not to have Marphans is my mom. When the doctor came in and told us...
    Eva99 Eva99 13-15, F 1 Response Jan 26, 2013

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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 people could say poor me. Why is this happening to me. Why not some one else. When we should be saying. Why not me. That has changed...
    acjf acjf 22-25, F 2 Responses Aug 27, 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 coaster the last year has been. We lived in A state in Australia that has poor health care and after his initial diagnoses i...
    gypsymae gypsymae 31-35, F 5 Responses Jan 20, 2011

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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. So not having to dance never bothered me at all. I just enjoy every day. That is something that I am so able to do. I...
    ac1986 ac1986 26-30, F 1 Response Sep 11, 2011

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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 i.I've seen two different women handling it so i've seen what mistakes you can make such as closing yourself up at...
    illiona illiona 26-30, F 2 Responses Feb 16, 2008

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    I am not fat nor have I ever been fat i am a

    size 3 but I have more stretch marks that a pregnant chick and they're everywhere :/ I use to be really self conscious about them and I still wear board shorts instead of bikini bottoms cause my hips and thighs are so bad
    Theweepingangel Theweepingangel 18-21, F May 21

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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 that I have it repaired. I didn't give him a date right away. I wanted to discuss it with my husband first. Both my...
    Bethsalomon Bethsalomon 41-45, F Feb 7, 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 is this happening to me. I think that we should say, why not me. That is something that has so changed the way that I used to think...
    ac1986 ac1986 26-30, F Aug 28, 2011

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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 some little things that were different about me than other kids. I wasn't at the same level physically as other kids...
    bdallas14 bdallas14 16-17, M 6 Responses Jan 18, 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 back in the old country. My whole family will be there. I really wanted to be there too but I can't. The surgeon...
    Bethsalomon Bethsalomon 41-45, F 2 Responses Mar 6, 2012

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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 contact lence and  feel more better about myself i dt care if i got marfans u must be special to have it like its really rare and...
    kirsty2k8 kirsty2k8 16-17, F 1 Response Sep 4, 2008

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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’s because where I come from (Haiti) It’s hard to get visa to come to United State. When I finally get the visa...
    bellelune bellelune 18-21, F 4 Responses Dec 16, 2010

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    Related Experiences

    ** I do not have Timothy Syndrome, my baby sister does, but she's too little to share her story ** My little sister was born a year and a month ago, premature. She was tiny and...
    allydoe allydoe 18-21, F Nov 19

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    I got diagnosed when I was 3 and I have it in both eyes. Just a few months before that I had a brain tumor. I can not begin to image what kind of stress this put my parents under...
    macyl macyl 18-21, F Nov 30

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    I was diagnosed with Duane Syndrome in my right eye when I was just a baby, when my Dad noticed I couldn't move my eye. From a very early age I remember being in the hospital...