Joint Hypermobility / Marfan Syndrome

[darkglobe]

Hi.

I've just been diagnosed with Marfan Syndrome. I already knew I had Joint Hypermobility Syndrome (I scored 9/9 on the Beighton test), but today the specialist confirmed my fears.

I've read the Wikipedia article on Marfan's, which goes into some detail about the condition, and I've been given a booklet "Living with Marfan's Syndrome", but I was wondering if any other DF member has further info on the condition, or even if someone here has either Marfan's or Joint Hypermobility?

So far I'm not overly worried, because I have suffered no heart problems (which are perhaps the most serious element of the condition), although I have had eye problems, rib problems, back problems and stuff.

Anyone who knows anything about Marfan's will know that it's hereditary. Therein lies the fucking problem - I'm adopted. Typical! So far I know that my biological mother suffered from Glaucoma (sub-40 years old), and my father was exceptionally tall. I'm 6 ft 3, with long fingers and toes.

Not looking good.

So yeah - anyone know anything the condition, or have it themselves? I'm attending a specialist clinic, but that's not until December, I cannot wait that long before finding out more.

[chl182]

Would just like to say that one of Spongebob's idols, Joey Ramone had Marfan syndrome too... Sadly died at 49 yo due to something totally unrelated to MS (cancer).
Might wanna stay off the drugs that mess with your heart tho

[darkglobe]

I'm totally clean and sober. Gave up smoking a while back, too.

I was reading about Joey Ramone (I like the ramones). Can't believe he was 6 foot 8!!

[chl182]

Spongebob loves The Ramones!!! Has all their albums too Joey was always known for his height. One of the tallest punk rockers around... By the way, what is your height darkglobe? Spongebob's only reaching 6ft which is real sad

[Metomni]

From the looks of it you just need to get regular check-ups and make sure that you stay on top of things. Being sober surely helps, and if something takes a turn for the worst, then check-ups with your doctor should be able to catch em sooner rather than later.

Good luck friend.

[darkglobe]

Thanks