I Have Marfan Syndrome Stories of Experiences

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

  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...

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'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...

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...

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...

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...

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...

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...