Worried I have Marfan Syndrome

[Peterthegreatworrier]

This is a fear which has come and gone for me over the years. Because I'm thin, have long fingers, am slightly hypermobile (only really my fingers) and can do the hand and wrist sign, I'm worried I might have undiagnosed Marfan syndrome. I'm 23 and I have never had any dislocations, hernias or serious eye problems (I have slight longsightedness, which isn't the type of eye issue associated with Marfan by my understanding). I've had ECGs before and they've never found anything abnormal. Still, I'm worried that I could just be blissfully unaware and then one day suffer a ruptured aneurysm. I know this is probably unlikely, but it's really hard to shake.

[Lolalee1]

Hi Peter,if you are concerned get yourself tested,that should eliminate your fears.

[fizzymoon86]

I agree, the only way to rule it out is to get tested.

Do either of your parents have it? It is hereditary in the majority of cases. I’d say if neither parent is affected them your chances are slim.


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[ankietyjoe]

How do you even know what any of this is?

[Lolalee1]

Hope none of these worries are affecting your studies at Uni,Peter.X

[Lolalee1]

How do you even know what any of this is?

Doc Google.

[ankietyjoe]

Doc Google.

Well I know that........

[Peterthegreatworrier]

I agree, the only way to rule it out is to get tested.

Do either of your parents have it? It is hereditary in the majority of cases. I’d say if neither parent is affected them your chances are slim.


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Thanks Fizzy.
Definitely not, no one in my family has it. Furthermore, many of the features that I am concerned about are actually shared on my mother's side, and none of my family have had any of the particular problems associated with Marfan - this really suggests to me that they're probably just benign inherited traits.

[Peterthegreatworrier]

I've actually long been fascinated by medical stuff, and so I already knew quite a bit about it before I ever started worrying that it could have it

[Cyrus]

Hi, I used to have the same fear when I had health anxiety, because, like yourself, I have a body type that's similar. I obsessed over it a lot, and eventually found out this body type is actually common in people with benign connective tissue issues (I have Joint Hypermobility Syndrome, or Hypermobile EDS, which is NOT dangerous), and usually actually does not signify Marfan Syndrome, which is quite rare. The only way to know for sure is to get genetically tested for it, which I did, and then you'll know you don't have it. But like I said, fearing it off body type alone isn't necessary at all, and if there's no family history, it's really not likely. Do your best not to worry in the meantime. You're most likely fine.