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Marfans Syndrome

Anonymous #1

Anyone have it and feel like talking about it? I might have it, I'm not sure :redface:

.

Sorry for the bluntness :p:

Reply 1

*pink_sapphires*

1

I don't have it but one of my mum's best friends has it, as does his son. Both of them have had operations this year and I took the opportunity to learn a lot about it then. Feel free to PM me if you want to chat :smile:

Reply 2

hermaphrodite

15

never heard of it. let me just consult wiki

Reply 3

BigScouser

Looked this up when I was having my growth spurt around 16/17. Despite my monkey arms and long legs I don't have it. To quote the specialist investigating if I had it, "you're just a lanky *****"

Reply 4

Anonymous #1

OP

*pink_sapphires*

I don't have it but one of my mum's best friends has it, as does his son. Both of them have had operations this year and I took the opportunity to learn a lot about it then. Feel free to PM me if you want to chat :smile:

But I'd lose my anonship! :afraid:

Basically I have some symptoms that are consistent (and have had operations to fix one of them - Doctor said I might be "Marfanoid") but I've since realised that other people in my family have different symptoms of the same thing.

I have long fingers/toes/legs and my armspan is longer than my height. I have flat feet, am myopic and certain joints are positively awful.

I dunno why I'm even posting here! Maybe I'll just go see a doctor.

Reply 5

*pink_sapphires*

1

OP, I'm not going to know who you are, so don't worry about losing your anonship. I respect that though if you don't want to. I'm really tired now so can't think properly, but tomorrow I will come back to this thread and talk if you want? And you're posting here for support! That's what we're all here for anyway; to support one another. x

Reply 6

Anonymous #2

Anonymous

Anyone have it and feel like talking about it? I might have it, I'm not sure :redface:

.

Sorry for the bluntness :p:

Yo dude,

If you're not sure, just see a Doc - what makes you think you have this anyways? :cool:

Reply 7

Anonymous #1

OP

Anonymous

Yo dude,

If you're not sure, just see a Doc - what makes you think you have this anyways? :cool:

That as strange, I saw that Anonymous had posted and thought I'd forgotten I'd posted :conused: ah well...

Basically it's a genetic problem that affects entire families, but each person in the family affected might have a different set of symptoms. I have some (lanky fingers, legs and arms, myopia, a couple of joints that have been known to dislocate) and other people I've recently realised suffer (or have died) from conditions which are also symptoms. It's a little worrying, but I'm the first to notice that Marfan's accounts for it all. I think I will call the doctor :p:

Reply 8

Anonymous #1

OP

I'm also very supple in odd places :p:

Reply 9

Anonymous #2

Ah I see,

You know you could just have something called hypermobility and if you're in your late teens early 20s just lanky like a colt at the mo. But it's always best to see a doc rather than worrying about something that might never be - particularly if you know some people have died from it. Why have that axe hanging over your head?

Get them to do the checks and get some peace of mind. You know it makes sense :smile:

Reply 10

Anonymous #1

OP

True, I will book an appointment at some point (I think if I've "survived" this long without knowing, another few weeks won't hurt :p:

). I know I'm hypermobile, but there could be this underlying cause, that's all. Would explain something far more annoying than hypermobility anyway (joint dislocation).

Reply 11

Ginger_Rogers

7

Anonymous

Ah I see,

You know you could just have something called hypermobility and if you're in your late teens early 20s just lanky like a colt at the mo. But it's always best to see a doc rather than worrying about something that might never be - particularly if you know some people have died from it. Why have that axe hanging over your head?

Get them to do the checks and get some peace of mind. You know it makes sense :smile:

I'm sorry....but why are you anon?

Reply 12

Anonymous #2

That's a very good question GR.

However, suffice to say, anon1 wanted to retain anonimity, and I thought it only fair that could best be served, by retaining my anonimity too.

Let's suppose, for just one second, however unlikely it may be, that anon1 and I just happened to be at the same uni and one day bumped into each other. He/she may say, "oh I know you, you were on that board discussing Marfans - ergo, anon1 is no longer anonymous if I have managed to deduce he/she is not GR, Pink Sapphires, Hermaphrodite or Big Scouser - all of which I am sure to rumble just by looking at them.

Hence, my case rests, by being anon2, anon1 retains anonimity.

An answer worth waiting for?

I think not.... :p:

G, I sure do rock - yes I am the only one who thinks so :frown:

Reply 13

Ginger_Rogers

7

Surely, if anon1 wanted to remain anonymous, he wouldn't come up to you and tell you that he was on the board talking about Marfan's? I don't quite get your logic.

And to the moron who negged me for asking why he was anonymous, he didn't seem to have a satisfactory reason for being anon. It wasn't like he was talking about his own condition, as your inaccurate negging reason suggested.

Marfans Syndrome

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