Living With Marfan Syndrome: Difficulties & How To Support

lifey.org/health Living With Marfan Syndrome: Difficulties & How To Support.

[@elgodric]

This beautiful woman is the hero in many ways

[@swiftyoverfifty]

I have Marfan, too. I have all the symptoms. Pretty classic. I had 2 kids. One with, and one without Marfan. I dissected at 4.4 aortic measurement, surgery for 12 hours, but I made it! This is 12 years later! My son with Marfan died at age 27. I love and miss him, so much. I’ve had almost 20 eye surgeries, but still see! Life is a huge gift! Live every day to the max! Thanks for helping spread awareness. It’s huge! Live large!

[@fatmafati7841]

Jennie Logsdon Martin I think i have it . And i'm scared some how😣😣😣😣

[@erikellott7700]

Lovely words regarding your children. I have Marfan’s. I’m 49 valve surgery 23 years ago. I mask my disease as well. It’s not easy being different.

[@horseladyjane4321]

It was hellish growing up with Marfan and it's still no picnic. It was almost as if I wore a sign that said "bully me". I must say though, I was given a life expectancy of mid to late 40s and here I am by the grace of God, at 57. I had my mitral valve repaired at 34. I had an awful lot of "female" problems because of having puberty brought on early to hasten the closing of my growth plates. Many years of many problems with that. I've had a plethora of treatments for a constellation of health issues but the greatest medicine of all has been prayer and my deep and personal relationship with my Creator.

[@trishahorton5878]

My 13 year old autistic daughter just got dx with Marfan. She's had eye problems since 4 months. She's getting ready to have back surgery. She's doubled jointed big time. Her hands and feet are always cool and damp. In 18 months she went from a 51 degree turn in her back to a 80. Her back is hunched over. We adopted her at 3 days old and according to bio family there is no one with the dx but most the children all have genetic issues. My daughter was the 10th child. I'm scared to death. I thought my son having stage 2 brain cancer was unbearable now I'm going to worry I'll lose my daughter. Prayers are greatly appreciated.

[@snowy_cookiem6014]

I'm so thankful I live in Australia, I have never paid for an eco or any off my surgeries including heart surgery.

[@tinampoche]

My beautiful sister passed from Maphan, They found her in the bathroom stall, where she died. Antioch, California.

[@Tandem51]

My Fiancee lost her fight with Marfan's on the 7th of July 2012, she had just turned 37 on the 12th June that year it was a bit of a shock as she was leading as normal a life as possible, she had a good job and never had a lot of days off because of her condition, She was going out everyday to do a full days work, and was always very happy and care free, she took ill on Monday 18th of June and after the main operation to repair the tear in her Aorta, she was kept sedated most of the time, she was in and out of surgery a few times during June and the beginning of July (I won't go into too much detail) and on the 6th of July I was told there was nothing more could be done for her, and support would be turned of the next day, The 7th of July was a terrible day, having to sit there and watch her go, knowing I could do nothing to bring her back.

[@ntrxpid]

Tom Daly I'm so very sorry for your loss, keep your head up brother, live the best life you can for you. God bless you, Tom.

[@cic5347]

I’m so sorry for your loss. I saw the lovely videos you made of her and she looked happy. I’m sure she’s always with you and that you’ll meet again.

[@lilkikia]

I have Marfan's syndrome I'm 21 and I just got diagnosed at 18 and I never got accomodations for activities in school. This made me think about if I should let my job and college classes know I have Marfan syndrome? The medical bills are so expensive for me or not as affordable since I'm a broke college student...

[@matthewlee6871]

Wow thank you so much , this really helped me. I wasn't aware I had symptoms

[@MH-hw4uh]

Or it can be normal. I have Marfan Syndrome. It's diversely unique to everyone. No two patient are alike. Not all are tall either. I'm tall grew up skinny but my brother and sister are short. I have scoliosis and many other family members. Heart problems and eye problems run greatly in my family too. It's a complicated condition. With several signs and symptoms. Seeing the doctor regular and having annual, eyes and heart check ups are vital.

[@jarraies4939]

How tall are your sibilings

[@leewhy6238]

This was helpful for us, thank you

[@scottlink183]

Well, in all honesty not sure how to respond, I am 55 male diagnosed w/ Marian’s as a child. Did the Milwaukee brace, traction then upper and lower spinal fusions had my hips fused when I was 13 because docs said my hip socket would freeze solid unless I had the hip fusion so I did. Found out a few yrs ago the surgery did not work. I choose not to have children however I grew up playing sports, being active despite the surgeries, body casts, months and months in bed in a body cast.. I think if I did have children I would let him or her determine on their own what limitations they have. No weight lifting of course, haha! If I had a dime for every doctor who told me that..

[@conradsmith9441]

I have less obvious marfan’s and my chest sticks out too. I’ve got almost all of the symptoms. The skinniness has made me insecure my whole life and there is very little I can do to fix it. I am especially worried about what girls think, because I’m lanky skinny and look weak. I have tried lifting weights and eating a lot but it doesn’t really work.

[@radovanvico6908]

You shouldn't lift weights i think, it's not good for the heart of people who have marfan.

[@DrVink86]

You will see that the right girls will not care about stuff, they right girl will like you for you and not what you look like. (fellow marfan speaking from experience)

[@simonpetkov6640]

Wow so thats what it is with my friend i was wondering what is that i thought its just bcs he is thin