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Rent and Marfan Syndrome

ben1235
Swing
joined:1/12/05
Swing
joined:
1/12/05
Rent and Marfan Syndrome#0
Posted: 11/23/05 at 12:28am
Hey everyone,

Happy Rent opening day. I want to ask you all to take some time today to remember Mr. Larson and think about his needless death. Jonathan's death from an aortic Anyereusm, believed to be caused by Marfan Syndrome, could have been prevented if doctors in the hospitals he visited had known about the condition.

As a young man, who also has Marfans, Jonathan's words and music and life are an inspiration to me, as I know they are for many others. Please take your love of his work and the energy you feel, and channel some of it into spreading awareness of Marfans. you can visit www.marfan.org or the Jonathan Larson performing arts foundation at http://www.jlpaf.org/ for more information.

Because of the work of his family and the National Marfan Foundation, I am free to pursue my dreams. I am in his debt, and think we owe it to him to try to do what we can to prevent more needless deaths.

Enjoy the movie, it really is terrific, and I hope you all have a great day


Updated On: 11/23/05 at 12:28 AM
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Radioactiveduck
Broadway Star
joined:7/18/05
Broadway Star
joined:
7/18/05
re: Rent and Marfan Syndrome#1
Posted: 11/23/05 at 2:24am
He died from Marfan? Wow, i didn't know that. I was tested a few times for Marfan's Syndrome when I was younger.
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LizzieCurry
Broadway Legend
joined:3/7/05
Broadway Legend
joined:
3/7/05
re: Rent and Marfan Syndrome#2
Posted: 11/23/05 at 3:38am
"This thread reads like a series of White House memos." — Mister Matt
Updated On: 11/23/05 at 03:38 AM
WOSQ
Broadway Legend
joined:7/18/03
Broadway Legend
joined:
7/18/03
re: Rent and Marfan Syndrome#3
Posted: 11/23/05 at 11:17am
With a Marfan diagnosis there is treatment, sometimes drastically invasive, but viable.

With no diagnosis, there is no treatment. One of the most presumptive and scary things I have ever done is told someone to go talk to his doctor about Marfan and even given him the name of the specific test to ask for which is an 'echo-cardiogram' (this is a phonetic spelling).

After you learn about Marfan, make sure your own doctor knows about it. You'd be surprised how many do not.

It always amazes me that pediatricians in Jonathan's life didn't diagnose Marfan. Its not like he was from the boonies. He grew up in Westchester.
"If my life weren't funny, it would just be true. And that would be unacceptable." --Carrie Fisher
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sadiem100
Broadway Star
joined:7/14/05
Broadway Star
joined:
7/14/05
re: Rent and Marfan Syndrome#4
Posted: 11/23/05 at 11:20am
I've never even heard of that- thanks for starting this thread.
"Electricity sparks inside of me... and I'm free, I'm free."
Di2
Broadway Star
joined:11/18/04
Broadway Star
joined:
11/18/04
re: Rent and Marfan Syndrome#5
Posted: 11/23/05 at 11:51am
One of my closest friends died of Marfans, too. She was 23 years old and dropped dead in front of her friends while playing basketball.

She said she felt funny, stood up, looked around and died right there.

The EMT's said she was dead before she hit the ground.

Marfan's is so scary because most people don't know they have it until it is way too late.

God bless you Melissa, I will always remember you.