Re: newspaper article on EDS, health care, and me

[Guest guest]

Joyce,

Let me know when it comes out. I'd love to see a copy.

-Barb

newspaper article on EDS, health care, and me

Well, after doing an interview and having pics done almost a year ago

and no article (or explanation) sometime in the next few days one will

be printed in the other provincial paper. I'll just keep my fingers

crossed about the conttent and hopefuly no misquotes!

I talked a lot about how hard it is to be stuck on these waitlists for

physicians which can be as long as 12 months only to find that person

either knows nothing about EDS or is not interested then you have to

start again. In Nova Scotia, our system has been cutback and cut back so

if you have a chronic condition and/or rare condition and need multiple

specialists and tests/ procedures you are wasting months if not years

out of your life waiting. Going into Emerg for tge dislocations I can't

fix is harder too. Not only do ihave to be worried about ignorance but

how many hours I will be stuck there and the waits are getting worse

because of cutbacks in inpatient beds and outpatient services. There are

just a lot of problems here and I also think that if I was a child with

this condition I would have been sent out of province to a group of

specialists long ago. It is hard being here with a rare disorder when

there is no time for most docs to read about it and although several

really try it is not the same as the people here who have been able to

go to the NIH or see someone with reasl hands on experience with EDS and

its multitude of problems. Most here just know about hypermobilie joints

and stretchy skin. Since I have probs with every part of my body I have

had to get in line to see a different specialist for each. And each with

an excessively long waitlist. Aargh!!!!!!!

SO, wish me luck... I'm going in with a bunch of my hand splints for

pics this afternoon.

Joyce

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