Re: copy of letter sent to The Physician and Sportsmedicine

August 27, 2004

Hi

Great letter....hope it gets some where> I myself have written a letter to

the health editor of Canadian Living magazine and got a very short reply

back saying that it doesn't fit in their current lineup. I will continue my

quest and try other magazines. As I do live in Canada I am trying them

first, and then will move on to the American ones. I feel this is the least

I can do (educate people) for the memory of my dear boy who passed away last

year due to VEDS.

A fellow westerner (Alberta)

Betty

copy of letter sent to " The Physician and Sportsmedicine "

>

> 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

>

> To learn more about EDS, visit our website: http://www.ehlersdanlos.ca

>

August 27, 2004

Betty,

Canadian Living did an article on EDS in February 2000, but it was more

about the CEDAlist in the end I feel. The boy the article was discussing

didn't have VEDS though. Perhaps you might want to touch base with the

author of that article for pointers. I can send you the article if you

like.

Jill

August 27, 2004

Betty,

Canadian Living did an article on EDS in February 2000, but it was more

about the CEDAlist in the end I feel. The boy the article was discussing

didn't have VEDS though. Perhaps you might want to touch base with the

author of that article for pointers. I can send you the article if you

like.

Jill

August 27, 2004

Betty,

Canadian Living did an article on EDS in February 2000, but it was more

about the CEDAlist in the end I feel. The boy the article was discussing

didn't have VEDS though. Perhaps you might want to touch base with the

author of that article for pointers. I can send you the article if you

like.

Jill

August 27, 2004

Hi Jill

Thanks for the info. I do in fact have that magazine as a result of being a

pack rat. The more articles I read I am more convinced that EDS orVEDS is

not as rare as we are led to believe. I would like to get as much info out

there as possible. If I could help just one person be aware of this

potentially fatal syndrome it would be worth it.

I am so sorry you've been ill. Hope you are on the road to recovery. While

on vacation at Sauble Beach this year I made alot of visits into Owen Sound

as my Dad has been hospitalized several times for pancreatitis. They have

just done an MRI (had to go to LOndon) and since he had another attack his

family doc got the results faxed (actually my Dad had to sign it first to

give permission to give it to the doc ---who ordered it in dthe first place)

anyway he does have a benign tumour and a tear in the pancreas, so they are

awaiting the surgeon to see whats next. I told him to mention that it was a

possibility that he does have VEDS. The lab results aren't back from Seattle

yet for my parents. Anyway got to run...good to hear your'e back on.

Betty

Re: copy of letter sent to " The Physician and

Sportsmedicine "

> Betty,

>

> Canadian Living did an article on EDS in February 2000, but it was more

> about the CEDAlist in the end I feel. The boy the article was discussing

> didn't have VEDS though. Perhaps you might want to touch base with the

> author of that article for pointers. I can send you the article if you

> like.

>

> Jill

>

> To learn more about EDS, visit our website: http://www.ehlersdanlos.ca

>

August 27, 2004