Re: Re: ATTN Plz! Names of the best geneticists and rheumys in Ontario

[Guest guest]

Rhea: We took our dtr. to Dr. Lea Velcher at North York Gen. with the

specific question of EDS hypermobile type and did not receive a

Diagnosis, and her statement us was that she did not have a test

available to confirm EDS hypermobile type. The simple examination Dr.

Grubb did confirmed it positively. I would truly just trust the

judgement of a competent rheumatologist. It seemed to me that if Dr.

Velcher couldn't use a blood test, then she was incapable of putting the

symptoms together and using good judgement and experience to verify a

diagnosis. We pay doctors to use their brain. In my experience a

geneticist does not provide treatment which is what most are looking for

unless needed for disability benefits.

I also have the name of a Dr. Chidiak @ , Toronto General

Hosp. a gynecologist who turned to genetics research. I have not

attempted to research his credientials and the name was passed to me by

dtr.'s ADHD, LD, dr. She is usually doesn't send us wrong, but I have

the definite experience that Ontario docs just prefer not to diagnose

HEDS unless you have the obvious subluxing joints and past family was

diagnosed.

We have an appointment with bone metabolism clinic at St. Mikes For

April 19, 2004, with Rheumatologist so after that date I could give you

info on the experience. I have been so disappointed so many times over

the years that I am very skeptical and unless you have verification from

another patient I really would not put out money. Now that you are

adult quite possibly the medical approach changes.

Regards, Bernie

Re: ATTN Plz! Names of the best geneticists and rheumys

in Ontario

Thank you Jill! It looks like she is the one I'll be seeing!

Do you have any rheumys on your list?

Thanks Jill! What would I do without my ceda family?

-Rhea

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

[Guest guest]

Bernie,

The one to see at NYGH is Dr. Meschino - she's on our medical board of

directors as well.

What you need to know about the diagnosis of hypermobility type EDS is that

the diagnosis is made solely upon clinical presentation and family history.

There is no test for it at this time. There is however, one glaring

difference between hypermobility syndrome and EDS - hypermobility type and

that is skin issues. In order for a diagnosis of EDS to be made, there must

be skin issues, which may include any of the following and and of the

following to varying degrees:

* extensive bruising or ease of bruising

* wounds that open despite sutures

* wound that heal poorly with keloid scars

* wounds that open after apparent healing

* skin that can be pulled away from the body

* loose or wrinkly skin that appears to be many sizes bigger then the

body

* thin skin that feels like a chamois to the touch

Dr. Meschino has diagnosed EDS and hypermobility syndrome in so many

families and knows EDS herself very well. She is exceptional.

The treatment of EDS and hypermobility syndrome is the same regardless of

the diagnosis however, so you may encounter physicians who question the need

for a diagnosis that differentiates between the two.

Jill

[Guest guest]

Rhea,

None that I would consider travelling to Toronto for - but there is an

excellent one in Kingston you might want to see, he's just great!

Jill

Thank you Jill! It looks like she is the one I'll be seeing!

Do you have any rheumys on your list?