Marfan Syndrome Public Service Announcement

A Public Service Announcement created by the National Marfan Foundation (NMF) featuring Anthony Rapp, star of the original stage and movie versions of the hit musical "RENT." Info on the NMF can be found at www.marfan.org.

Category:

Entertainment

Tags:

• RENT
• Anthony
• Rapp
• Marfan
• syndrome
• NMF
• Jonathan
• Larson

[TrueMoore]

I think I could have Marfan Syndrome.. I`ve got long arms and legs and a very long head.. also my fingers a re very long, and I had a inguinal hernia some time ago. Im 16 years old and kinda large for my age and really skinny. Do you think I have marfan syndrome ?.

[JonnyDMartin]

You should talk to your parents and your doctor about it. If you have questions, you can call the NMF hotline at (800) 8-MARFAN, ext. 26 to speak to the hotline nurse to discuss your symptoms and next steps in seeking an evaluation.

[blinkedd18]

My doctors test me and said I dont have it.

But I'm still worried.

I can do the thumb and wrist sign, and I think its a very major sign.

What do you think? Should I trust my doctors?

[JonnyDMartin]

The thumb and wrist signs are consider minor criteria. If you have other questins you should contact the National Marfan Foundation's nurse at support(at)marfan(dot)org, or 1 (800) 8-MARFAN x 26. She will be able to help you with your question.

[brian472]

Hey just woundering if anybody else here had to give a blood and urine sample as part of testing for marfan syndrome?

Im woundering because i have done some research on this but could not find any reason why my docter would need to take blood and urine

An educated answer would be greatly appreciated..thanks

[JonnyDMartin]

You should contact the National Marfan Foundation's nurse at support(at)marfan(dot)org, or 1 (800) 8-MARFAN x 26. She will be able to help you with your question.

[jfrancisco19]

im a marfan patient,, i have all the symtoms of the said disease.. I was operated last 2007 in aortic aneurysm.. Im a Filipino.. but now im still surviving w/ that disease. To all the marfans out there dont be scared w this disease but be brave and pray to our Lord Jesus Christ to give us strength and wisdom.. Last year i thought im already dead by now.. but still here and almost normal,, to all marfan... dont hesitate to mssge me.. what ive been going through at this moment..

[irkofan]

My best friend (friends for 11 years now) has this disease. She's had major surgeries on her eyes, heart, and some for a pace maker. Her scars make hers horribly self conscious, but she is one of the most beautiful people I know--on the inside and outside.

[JonnyDMa]

@kjburger12 There are several diagnoses that physicians may consider if someone has some, but not all, features of Marfan syndrome. You shoudl call the NMF and speak to the nurse on staff- 800-8-MARFAN x 26.

[kjburger12]

I was wondering if anyone hear have heard of Marfan-Like Syndrome? It is what I was told I had.

[Thecrudetubers]

@TrueMoore im same age as you and have got the same symptoms and and caved in chest and i can dislocate my thumb and stuff

[TheMarine1903]

my friend is a marfan he is actual the prince of the marfans. he says they are an alien race thats soon to take over the world. he consantly talks about bout his home planet of marfainia with has 26 suns revoling aroud it.

[sampsonitelodge]

bin laden died of this very syndrome in 2002 @ a hospital in dubai. What the white house is currently spewing is all BULLSHIT.

[DarkenedClarity]

You will always have it you are born with it... it starts to show in your teens. I have it im 26 years old so far so good but I dont go have check up like I need to but thats cuz I dont worry about it my times will come and I wll be ready for it all alone anyway so dont make it hard to say that crap.

[MissTwiggy96]

I had marfan syndrome my whole life and I am 15 now i am lucky and my condittion isn't verry bad. I am still tall at 6'3" but I am not as skinny and i have been able to live a normal life to a extent and the perc is you don't really participate in gym. I still ride my horses in rodeo even though my doctor doesn't like it so much but i still only live once and it is something that makes me happy so I am not willing to give it up.

[Lee420Boss]

@paddyjoejr1 whats warfarin im on atenolol is that the same

[Lee420Boss]

my mom died from this wen i was 4. and after she died we found out that me and my twin sister both have marfan's. 

[lolipop123654]

I have marfans syndrome... Luckily it isnt servere. I used to love playing sports and being active all together... But now i understand that i have to take it easy. It does suck, but i have learned to live with it and joke around about it with my friends.