copy of letter sent to The Physician and Sportsmedicine

[Guest guest]

Below is a copy of a letter I've just sent in to the journal " The

Physician and Sportsmedicine " .

It seems to me suddenly (during this Olympics) that maybe the way EDS

can get some real medical attention is to climb aboard the Sports

Medicine bandwagon - which may be where we most belong anyway. The

letter below will explain my thinking.

However inadequate, this is what I've done with that connection today

to try to garner a little more research and medical attention for us.

I hope others here might have other strings to pull or better

connections, or better ideas about how to push the connection between

EDS and Sports Medicine, and be able to do more.

If there's a Sports Medicine Clinic or University faculty near you,

they might be the best people to lobby, for our share of medical help

and notice.

Here's the letter:

- - - -

I have Ehlers-Danlos Syndrome, or EDS, a genetic collagen disorder

that may affect one in every five thousand people - although this

disease is both radically underdiagnosed and the paradigm of an

" orphan disease " . EDS receives remarkably little medical attention,

compared to, say, MS (even taking the greater incidence of MS into

account.)

It occurs to me that the situation should be the reverse of this,

given the growth of sports medicine and its increasing importance.

After all, the best short description of Ehlers-Danlos Syndrome (EDS)

could well be that is as an illness in which sports injuries occur

every day, one could even say all day, and even during sleep; due to

our more weakly constructed connective tissue, and bone and muscle

tissue. To put it a little rudely we EDSers are, as it were, very

close to being the human equivalent of specially-bred or genetically

altered lab mice specifically designed for the study of sports injuries.

Even more, it's not at all uncommon for people with EDS to become

Olympic athletes when young. It's often thought that this is because

our pain tolerance is so very high, and our flexibility is usually

remarkable as well. Two important pluses for prospective Olympians.

Another tie is that many EDSers pay very strict attention to the

findings of Sports Medicine because those results, especially with

regard to the treatment and prevention of sports injuries, are

directly relevant to their everyday lives and will be as long as they

live.

Yet somehow sports medicine hasn't really discovered EDS (at least to

my knowledge) and therefore the rest of medicine barely knows we're

around. How ironic.

So I hope the professional readers of " The Physician and

Sportsmedicine " will consider this an introduction, and perhaps even

employ a little of their professional imagination looking for ways in

which we can be useful to each other. If readers want to discover more

about EDS, that information is as close as the nearest search engine,

or edstoday.org, and if researchers wish to contact a number of EDSers

at once we're as close as the Yahoo CEDA discussion group:

http://health.groups.yahoo.com/group/ceda/

amongst other places.

I hope EDS and Sports medicine might possibly be of service to one

another - if nothing else, EDSers are acutely aware that our illness

could use some more attention! Waking up with significant sports

injuries every single day, too often to the extent that we feel as

though we've been beaten and left in an alley the night before, is no

picnic. We EDSers know we can use all the help and research attention

we can get - and right now, we aren't getting much. Thanks in advance

for giving us some thought.

ston

, BC, Canada