19 Feb 2007 23:21:57
Henry Law
Marfan syndrome and rowers

The thread elsewhere on the sudden death of the Chattanooga rower makes
me wonder whether the rowing world is aware of Marfan syndrome. (Not
that I've any evidence whatever for a link between the US incident and
Marfan, you understand: it just makes me think of it).

Rowing coaches look for tall people; one of the symptoms of Marfan is
great height (although it's often associated with a lanky frame rather
than a heavily-built one). There was a famous volleyball player called
Flo Hyman who, unnoticed by everyone it seems, suffered from Marfan's
and died in the middle of a game from a ruptured artery in her heart,
one of the dangers of untreated Marfan's.

Some programs screen for Marfan and similar diseases: see
http://www.theacc.com/sports/w-volley/spec-rel/110204aad.htmlfor an
example; but in the mean time if you're presented with a very tall
recruit (Hyman was 6' 5" - nearly 1.96m), loose-jointed with long limbs
and fingers, and possibly with poor eyesight, it might be worth doing
some more careful screening in case the parents haven't thought of it.
The condition is quite variable, it seems, both in its severity and in
the appearance of external signs.

(The son of some lifelong friends of mine died from Marfan-related
causes a couple of years ago).

--

Henry Law Manchester, England


22 Feb 2007 19:48:32
Anne Rogers
Re: Marfan syndrome and rowers

> The thread elsewhere on the sudden death of the Chattanooga rower makes me
> wonder whether the rowing world is aware of Marfan syndrome. (Not that
> I've any evidence whatever for a link between the US incident and Marfan,
> you understand: it just makes me think of it).

I'm very aware of Marfan syndrome and also other related conditions, they
are not so life threatening as Marfan is, but they can be severely quality
of life effecting and for women can be fatal in pregnancy. Marfan syndrome
and Ehlers Danlos syndrome (which has many types) are chronically
underdiagnosed in the UK, there are 4 consultant rhematologists that
specialise in them and other rheumatologists should be able to
diagnose/exclude, but unfortunately they aren't, if you ever do come across
someone you suspect to have Marfans or other connective tissue disorder,
they need to see one of the specialists, which can be found at
hypermobility.org.uk. Thankfully I have the most benign type of Ehlers
Danlos syndrome, but it was completely missed by a rheumatology registrar
and as it does affect my heart and skin as well as my joints, it is
something I needed to know as it's relevant to almost all medical treatment
even if what is being treated is entirely unrelated.

Cheers

Anne