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Robin,

> In the best of all possible worlds, the Doc's who are on the front

> line would be able to keep abreast of current research. Alas, the

> time crunch. Failing that, It would seem appropriate that they

> would at least attempt to look at the literature when faced with a

> special needs ie. " rare " case rather than dismiss it out of hand, which

> has been my experience.

In the best of all possible worlds, the doctors would admit they don't know

everything and they aren't gods. In the best of worlds, they would

communicate with patients and treat them as equal partners in health care.

In the best of worlds, the doctors would keep up with all the research on

any condition their patients have.

In reality, many doctors view themselves as infallible know-it-alls. In

reality, many doctors fail to communicate with their patients as equals

whether it's from lack of respect for the patient's capacity to comprehend

or because of constraints placed on them by insurance companies and HMOs.

In reality, doctors spend more time dealing with administration issues and

insurance/HMO requirements than in researching the latest medical

information. Even when they do research information on EDS, they often find

out-dated research findings and form incorrect assumptions. And let's not

forget the rising cost of liability insurance which is causing doctors to a)

stop specialty practices and B) turn away patients with rare conditions.

It's a very big divide between the perfect world and where we are now. Sad,

but true. I don't have any answers, just sharing my frustrated

observations.

I'll be seeing my new doctor next Monday. I've only seen him twice, but he

seems to be pretty good (so far) about trying to keep up with the latest

research and asking questions when he doesn't know the answers. I'll keep

you posted on how it goes next week when I have my annual physical with this

guy. Hopefully, my high opinion of him will remain intact.

-Barb

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Robin,

> In the best of all possible worlds, the Doc's who are on the front

> line would be able to keep abreast of current research. Alas, the

> time crunch. Failing that, It would seem appropriate that they

> would at least attempt to look at the literature when faced with a

> special needs ie. " rare " case rather than dismiss it out of hand, which

> has been my experience.

In the best of all possible worlds, the doctors would admit they don't know

everything and they aren't gods. In the best of worlds, they would

communicate with patients and treat them as equal partners in health care.

In the best of worlds, the doctors would keep up with all the research on

any condition their patients have.

In reality, many doctors view themselves as infallible know-it-alls. In

reality, many doctors fail to communicate with their patients as equals

whether it's from lack of respect for the patient's capacity to comprehend

or because of constraints placed on them by insurance companies and HMOs.

In reality, doctors spend more time dealing with administration issues and

insurance/HMO requirements than in researching the latest medical

information. Even when they do research information on EDS, they often find

out-dated research findings and form incorrect assumptions. And let's not

forget the rising cost of liability insurance which is causing doctors to a)

stop specialty practices and B) turn away patients with rare conditions.

It's a very big divide between the perfect world and where we are now. Sad,

but true. I don't have any answers, just sharing my frustrated

observations.

I'll be seeing my new doctor next Monday. I've only seen him twice, but he

seems to be pretty good (so far) about trying to keep up with the latest

research and asking questions when he doesn't know the answers. I'll keep

you posted on how it goes next week when I have my annual physical with this

guy. Hopefully, my high opinion of him will remain intact.

-Barb

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