I Have Marfan Syndrome

This group is for anyone who has or supports someone with this disorder. 123 People

    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

    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
    3 Responses Feb 7, 2013

    I'm curious to know how y'all deal with the

    stares/judgement/bullying y'all get because of Marfans. I get stared at everywhere I go and some people even come up to me and ask me why I'm so skinny or tall. From my experience, elementary school kids were kinda rude, then middle school came and It got better, and I n high...
    user5443 user5443
    3 Responses Sep 24, 2015

    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

    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

    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
    2 Responses May 16, 2010

    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

    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
    17 Responses Mar 7, 2008

    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
    1 Response Feb 22, 2012

    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
    Jun 12, 2012

    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

    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
    2 Responses Apr 21, 2012

    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

    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
    18-21, F
    1 Response Sep 4, 2008

    I had a spinal fusion

    when younger but feel lucky still because my aortic valve which i check on yearly usually has been okay. I didn't have any of the bad problems growing up except the scoliosis associated with Marfans. I do have bad soreness in my joints and back ever since my spinal fusion though...
    IcedJuice IcedJuice
    31-35, M
    1 Response Jan 13, 2015

    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 have found out why I have small hands and tiny wrists. For my bones are not like other peoples. I dislocated my...
    acjf acjf
    22-25, F
    1 Response Aug 20, 2011

    Hi, I'm 13 and I have grown up knowing fully

    that I have Marfan syndrome, my mum and my brother also the syndrome and I inherited it, my whole life my mum has been open to talk about our condition and has tried to explain the surgeries that I will most likely have to go through, talking about this is tough for me as...
    KitKatAngel KitKatAngel
    18-21, F
    Jul 14, 2015

    I have marfan syndrome.

    At 28 years of age it came as a slight shock. I had always wondered about my concaved chest and why I was so tall and slender. As a child my doctors would tell my parents "oh, he will grow out of it." After seeing quite a few doctors and going through quite a few tests, I was...
    gibsonguy182 gibsonguy182
    26-30, M
    1 Response Mar 2, 2016

    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
    18-21, M
    6 Responses Jan 18, 2010

    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

    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
    2 Responses Feb 15, 2008

    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
    1 Response May 24, 2012

    I have what I'd consider pretty severe Marfans.

    I'm 18 and my list of problems requiring surgery so far include detached retina at age 14 (I had 5 surgeries to correct this and even after all that I'm practically blind in that eye) open heart surgery age 16 (severe mitral valve regurgitation and also a small hole in my...
    user5443 user5443
    1 Response Jul 10, 2015

    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, 2014

    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
    14 Responses May 2, 2012

    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

    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
    1 Response May 21, 2014

    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, 2014

    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

    Hello everyone - I’m attempting to see

    if anyone living with Marfan’s would be interested in meeting, comparing notes, and just generally sharing support. Maybe we can all be there for each other since we’re all going through this? The meeting would be in within the Boston, Massachusetts area this spring… very...
    jasonandrew jasonandrew
    41-45, M
    Jan 30, 2015

    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

    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

    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

    Good evening! I have been diagnosed with

    Marfan Syndrome when I was three months old by an ophthalmologist in a hospital in Poland. I am now 6'2", after two cardiac surgeries and two eye surgeries with about seven other medical conditions. it's pretty tough but I wouldn't change my life even if I had the choice. I...
    sakrona sakrona
    18-21, F
    3 Responses Feb 8, 2016

    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
    22-25, M
    Jul 21, 2014

    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

    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

    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
    22-25, F
    Mar 15, 2014

    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
    22-25, F
    Nov 3, 2013

    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

    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

    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
    1 Response Mar 6, 2012

    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
    26-30, M
    1 Response Mar 25, 2013
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