My son has Marfan syndrome. He's 21. He's very thin and has tremendously long legs, his eyes have the slight slant and the lenses are warped, his teeth are crowded and he has kyphosis, he can contort his body and his joints give him incredible pain...but he's just 5'10 (he's generally around 117 lbs and celebrates whenever he manages to get to 120), so... He was diagnosed 2 years ago at 19 after going to the ER with severe chest pain and difficulty breathing (collapsed lung). The problem he has most in dealing with how others perceive him is with other DOCTORS who question the diagnosis (as if genetic testing is inadequate) because in their minds he's not "tall enough" to have "Marfans." Ignorance of this condition runs rampant out there. Thank you for your efforts in educating others!

@TheMarfanFoundation

6 ай бұрын

So sorry for the delayed reply. We recently added resources to better respond to KZread comments. Sadly, the experiences you describe are not on common. Finding free support through the Foundation may be helpful marfan.org/calendar/

@TheMarfanFoundation

6 ай бұрын

Know our hearts are with your family.

It's not a sexual disease that you must disclose. If they ask you why you can't do something or look a certain way then you can tell them . Simple.

Hi sweetie! I have Marfan, too. I a\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! I tell people as soon as they show any interest.

@varunvgopal2446

4 жыл бұрын

Oh my God..I have MARFAN SYNDROME

@Lordani66

3 жыл бұрын

You have obvious marfan and knew it and had kids? You are a disgusting, evil person.

@stephaniecarpio1274

3 жыл бұрын

@@Lordani66 you’re stupid

@jimmynerdtron11

3 жыл бұрын

Would you suggest I go to doctor I’m very skinny long arms

@Jose_eug

3 жыл бұрын

@@stephaniecarpio1274 no, he is speaking facts

Thank you for sharing!

Thank you so much for this video I really wanted to watch something like.

@deadmeatjb

2 жыл бұрын

Like what

I didn't tell anyone outside of my family until I was 32. Main reason because I fear people would find me repulsive which for me warranted. I experienced first hand people talking bad things about people with Marfan to my face because they didn't know I have it too. Totally shattered my self esteem and confidence. Never been in relationship too because I am afraid of passing on this burden to my kids.

@voicesfromthevoid5672

Жыл бұрын

Same here

@krestainwatsonjr.

9 ай бұрын

i can relate to that. i have C.P. and i kept it hidden from everybody because i was afraid of what they'll think

@wraps777

8 ай бұрын

I also have Marfan syndrome. I take $10,000 worth of medication every year. The big thing I've learned is do not let the disease Define you. and do not let it defeat you. Yes, you will have days when you feel absolutely terrible. You will have days where you wish you didn't have to get out of bed. but by the grace of God I stand. The two things I recommend are having an excellent medical team, and taking the best possible care of yourself that you can physically mentally and spiritually. Hang in there.

@TheMarfanFoundation

6 ай бұрын

So sorry you have had some very difficult, and sadly sometimes common, experiences. We do have free support if helpful. marfan.org/calendar/

I often tell people early on because they usually think I have some kind of eating disorder once a lady came right to my foster mom and lectured her and spoke of how I looked like I was going to die like her child did. I was mortified but nothing I did helped put weight on and keep it on. It’s happened a lot growing up and I eventually tell everyone in my life in case I ever collapse again.

@Bon3zB3ats

3 жыл бұрын

I feel you, they use to tell my mom the same sometimes back when I was a kid, since we were you could say of low income they would always think the worse..

@minwellitsanicknamebegrate2531

3 жыл бұрын

@@Bon3zB3ats same I thought part of it was the fact I might have been neglected as kid but my body type never changed once I was older and eating as much as I could. Unfortunately as an adult I’m still underweight and look it so lots of people judge me for it. You would think they would be kinder to a person they thought was sick.

@beatrixbrennan1545

Жыл бұрын

I used to get watched in middle school at lunch time to make sure I ate. I was very underweight

@minwellitsanicknamebegrate2531

Жыл бұрын

@@beatrixbrennan1545 there was a kid on my bus who asked every day what I had for dinner and breakfast, they really thought I was being starved ,& a girl who had had a Ed ( she was recovered)started eating with me at lunch & would ask me questions about it, she thought I had one , but we ended up going to prom together as a group of single girls

@ricwhite612

10 ай бұрын

being male the comment si got growing up were "i could break you legs" or "i could snap you" and if you ade them feel as if they were being a nasty bully for picking on someone with a disability they wouldactually attack you because they know youc ant do anything about it

All my friends are chill about it NGL

O got marfan

it doesnt work if you tell people you have marfans, they go what? refuse to google it and continue to call you names

My daughter has to go to a genetics specialist but they haven’t confirmed

@fadjeja3141

3 жыл бұрын

Just learned today about Marfan, my daughter 12 years old is 5 feet 11.

I don t tell

I know a fellow marfan boy but he hides it. So many hide it

Good morning, Nabil from Morocco is sick with Marfan syndrome. He is married and has two daughters, Maram and Remas. Maram has Marfan syndrome. She has curvature in the chest and feet, heart valve problems, and severe visual impairment. We did not find specialist doctors in Morocco. I will travel with her to Italy for treatment. She had an orthopedic operation that was not crowned with success, unfortunately. I stole all my money for my child. I sold my apartment and my car. She now needs homicide and eye examinations and a foot operation. I no longer have anything. My child this year stopped studying. I would like someone to help me financially so that I can complete the treatment. She no longer drives to do anything, so I wrote to you. Help me save my daughter. We are in pain. in silence

@TheMarfanFoundation

6 ай бұрын

Our hearts are with you. While we cannot provide direct financial support, we do have many resources around the world that may be helpful to you. Fill out this form to hear from our Help & Resource Center www.marfan.org/ask and know we provide free support groups marfan.org/calendar/ Also, it looks like this comment had some translation issues and we have made common sense room for same in our reply.

Any marfans hit me up, im marfan

@builtdifferent4861

8 ай бұрын

I am

I am sick of marfan sayndrme

@user-fc2hb8nx2t

Жыл бұрын

شنهي خوينا شجابك هنا شنو شخصوك Have you ever been diagnosed with Marfan since this comment ?