Marfans Syndrome

[jelliebellie16]

My brother was diagnosed with Marfans Syndrome age 8 (now 9) and I would just like to know if anyone else has experience of this and how you deal with it as they get older.

what symptoms do you or your DCs have and does it affect your daily life?

TIA xx

I can't help much, but FWIW, the one person I knew with this syndrome was at the time an active young officer (mid20s) in the British Army. So it's definitely possible to get at least that far with no/minimal impact.

Not much help from me either I am afraid, the only person I know with this was someone I trained with as a nurse. I am almost certain that there is an organisation to give support and advice.

Thanks for your replies onimolap and kreecher. Its just nice to know somebody even knows someone with it, as its so rare.

I think my mum has looked at some organisations or something but they're all so vague as it effects every sufferer in so many different ways.

The only way my brother isnt effected yet is his eyes. Obviously the heart trouble is the most concerning but its reassuring to know you knew someone in the army with it :)

As with most conditions, the nhs webpage is a good start.

DBennet,, I know quite a bit about the condition itself, I just wanted to know if anyone has had any experience of it as it is quite rare and effects each sufferer in entirely different ways

(I changed my name since OP)

"and effects each sufferer in entirely different ways".

Agreed.

Anecdotes have limited use at the best of times but in a condition as variable as Marfan's they are really not good sources of information.

Which is why I linked to more general information such as:

"Marfan syndrome is a potentially serious condition because it can affect the heart and blood vessels. Although there is currently no cure for Marfan syndrome, treatments are available that can help manage the symptoms.

With regular assessments to screen for complications and prompt treatment when complications occur, the life expectancy of someone with Marfan syndrome should not be greatly affected."

And the last page on Treatment is excellent with symptoms, treatment and management for every possibility.