Raising awareness about Marfan Syndrome

[strofiwimple]

After having to delay for a few years for various personal reasons I am finally doing the ride late May into June next year.
I am doing the ride to raise funds and awareness for http://www.marfantrust.org/
Marfan syndrome is a very little known condition which if not diagnosed and treated can prove fatal-as it did to my close friends son who died at 22 while back packing in Australia.
He had a lot of the classic signs of marfans yet despite his parents taking him back and forth to the doctors when he was a child he was never diagnosed, "growing pains" being cited time after time.
Ironically when he was admitted to hospital in Perth after feeling chest pains the first thing the aussie doctor said to him was "have you heard of marfans?"
Tragically despite an emergency operation he died the day after.
The main reason for posting my thread is just to make any of you reading it aware of this condition.

 

[Thomk]

A close friend of mine has it. He nearly died in his 20s but was saved by an emergency op to replace his aortic heart valve and the insertion of a piece of prosthetic aorta. He's since had another even more serious op but is going strong in his 40s. I think trainee doctors in this country are made aware of Marfan Syndrome and it is fairly well spotted by doctors under the age of about 30.

 

[strofiwimple]

Thanks for that Thomk,
Glad to hear that our docs are becoming more aware of the condition,
Just got home tonight from my lejog, will post over the weekend about it.

 

[middleagecyclist]

Great cause. I rode the Pennine Cycleway to raise money for The Marfan Trust a couple of years ago. It's quite a small charity as things go so every penny really counts. Are you setting up a charity page? They use the Virgin Money Giving site (set it up for my ride). I'll pledge you some money and might even see you on LEJOG next year!