Re: Read this book on EDS? The Official Patient's Sourcebook...

[Guest guest]

Is this the publication from the UK? I think someone did buy it & report on

the EDNF board that is wasn't really much more than they already knew. They

said it was very general, nothing that helped them personally.

Liza

[Guest guest]

Betty,

Better late than never, get the antibiotic drops for your eyes, should be

OK.

Love, S.

I'm way behind on my mail

Read this book on EDS? The Official Patient's Sourcebook...

Hi guys,

For the second time I today watched the movie

" Jenifer " , about Jenifer Estess and her fight

against ALS (Lou Gehrig's Disease). As I often do

when I see movies like that these days, I went

online and searched for her name, to see what

happened to her after the movie was made etc.

Sadly she died last December, but she and her

sisters have done an amazing job in getting more

and significant research done on ALS.

Anyway, I saw mentioning of her memoirs, and went

on Amazon.co.uk to buy it. Did so, but then did a

search for EDS, to see what was there now. That

was when I found this book about EDS (and 8 other

books and booklets, most of them familiar), and

wondered if any of you have it. What do you think

about it? Is it worth $30-40 or something like

that? Does it offer any really useful

information? I am wondering if somebody haven't

posted about it here before... It is obviously

some real fat book, 404 pages...

Copy of Amazon info about the book below my sig...

Aase Marit

The Official Patient's Sourcebook on

Ehlers-Danlos Syndrome: A Revised and Updated

Directory for the Internet Age

Icon Health Publications

2 Used & New from £20.78

Availability: usually dispatched within 1 to 2 working days

See larger photo

Edition: Paperback

Browse our great selection of Books Special Offers and save ££s today.

More Product Details

------------------------------------------------------------------------

Product Details:

* Paperback 404 pages (August 1, 2002)

* Publisher: Icon Health

* ISBN: 0597833710

* Category(ies): Reference & Languages , Health, Family & Lifestyle

[Guest guest]

Hi

I did indeed get the eyedrops and the infection seems to be clearing up

(even though I did look like an alien for awhile) however my cough is still

hanging in there (even though I am taking straight codeine) and now my

throat hurts like you wouldn;t believe. I did pop into our local walk in

clinic and my own doc happened to be working and she said the throat seems

to be red but she thinks from the coughing and she said I can ride it out

the weekend and stick to taking the codeine syrup or she gave me a

prescription for a puffer (Flovent) any probelms with taking that?????? I am

so very tired of coughing & feeling crappy.Any suggestions would be helpful.

I just did take Tylenol 1's as regular tylenol just doesn't cut it for

me.(also I haven't taken the codeine sryup since last night.

Thanks

Betty

Read this book on EDS? The Official Patient's

Sourcebook...

>

>

> Hi guys,

>

> For the second time I today watched the movie

> " Jenifer " , about Jenifer Estess and her fight

> against ALS (Lou Gehrig's Disease). As I often do

> when I see movies like that these days, I went

> online and searched for her name, to see what

> happened to her after the movie was made etc.

> Sadly she died last December, but she and her

> sisters have done an amazing job in getting more

> and significant research done on ALS.

> Anyway, I saw mentioning of her memoirs, and went

> on Amazon.co.uk to buy it. Did so, but then did a

> search for EDS, to see what was there now. That

> was when I found this book about EDS (and 8 other

> books and booklets, most of them familiar), and

> wondered if any of you have it. What do you think

> about it? Is it worth $30-40 or something like

> that? Does it offer any really useful

> information? I am wondering if somebody haven't

> posted about it here before... It is obviously

> some real fat book, 404 pages...

>

> Copy of Amazon info about the book below my sig...

>

>

> Aase Marit

>

> The Official Patient's Sourcebook on

> Ehlers-Danlos Syndrome: A Revised and Updated

> Directory for the Internet Age

> Icon Health Publications

>

>

> 2 Used & New from £20.78

>

>

> Availability: usually dispatched within 1 to 2 working days

>

> See larger photo

>

> Edition: Paperback

>

> Browse our great selection of Books Special Offers and save ££s today.

>

> More Product Details

> ------------------------------------------------------------------------

>

>

> Product Details:

> * Paperback 404 pages (August 1, 2002)

> * Publisher: Icon Health

> * ISBN: 0597833710

> * Category(ies): Reference & Languages , Health, Family & Lifestyle

>

>

[Guest guest]

Hi

I did indeed get the eyedrops and the infection seems to be clearing up

(even though I did look like an alien for awhile) however my cough is still

hanging in there (even though I am taking straight codeine) and now my

throat hurts like you wouldn;t believe. I did pop into our local walk in

clinic and my own doc happened to be working and she said the throat seems

to be red but she thinks from the coughing and she said I can ride it out

the weekend and stick to taking the codeine syrup or she gave me a

prescription for a puffer (Flovent) any probelms with taking that?????? I am

so very tired of coughing & feeling crappy.Any suggestions would be helpful.

I just did take Tylenol 1's as regular tylenol just doesn't cut it for

me.(also I haven't taken the codeine sryup since last night.

Thanks

Betty

Read this book on EDS? The Official Patient's

Sourcebook...

>

>

> Hi guys,

>

> For the second time I today watched the movie

> " Jenifer " , about Jenifer Estess and her fight

> against ALS (Lou Gehrig's Disease). As I often do

> when I see movies like that these days, I went

> online and searched for her name, to see what

> happened to her after the movie was made etc.

> Sadly she died last December, but she and her

> sisters have done an amazing job in getting more

> and significant research done on ALS.

> Anyway, I saw mentioning of her memoirs, and went

> on Amazon.co.uk to buy it. Did so, but then did a

> search for EDS, to see what was there now. That

> was when I found this book about EDS (and 8 other

> books and booklets, most of them familiar), and

> wondered if any of you have it. What do you think

> about it? Is it worth $30-40 or something like

> that? Does it offer any really useful

> information? I am wondering if somebody haven't

> posted about it here before... It is obviously

> some real fat book, 404 pages...

>

> Copy of Amazon info about the book below my sig...

>

>

> Aase Marit

>

> The Official Patient's Sourcebook on

> Ehlers-Danlos Syndrome: A Revised and Updated

> Directory for the Internet Age

> Icon Health Publications

>

>

> 2 Used & New from £20.78

>

>

> Availability: usually dispatched within 1 to 2 working days

>

> See larger photo

>

> Edition: Paperback

>

> Browse our great selection of Books Special Offers and save ££s today.

>

> More Product Details

> ------------------------------------------------------------------------

>

>

> Product Details:

> * Paperback 404 pages (August 1, 2002)

> * Publisher: Icon Health

> * ISBN: 0597833710

> * Category(ies): Reference & Languages , Health, Family & Lifestyle

>

>

[Guest guest]

Betty,

The Flovent is a steroid inhaler mainly used for allergies and asthma.I

don't see any harm in taking it, but don't understand the rationale of the

Dr. prescribing it. It's used primarily for asthma and allergies. The

codeine syrup will help your cough the best but you have to take it every

4-6 hours or what the Dr. wrote on the bottle, once a day won't help much.

The codeine mainly acts as a cough suppressant, won't really help your

throat at all. You could try gargling with salt water, or get some of those

OTC throat numbing lozenges or sprays. Don't use an NSAID though since you

have VEDS!!! Popsicles can be soothing, cold stuff! Maybe she should have

done a throat culture? The only other thought with the codeine is it causes

constipation. Boy O Boy I know a sore sore throat is awful! I forget how

much salt to use in a glass of water to gargle with, don't swallow it

though, ask Jill, she'd know. I'll forward this to her too for her opinion,

OK? I'm sorry you feel like crap!

Lot's of Love, and please take care!

Love, S.

Read this book on EDS? The Official Patient's

> Sourcebook...

> >

> >

> > Hi guys,

> >

> > For the second time I today watched the movie

> > " Jenifer " , about Jenifer Estess and her fight

> > against ALS (Lou Gehrig's Disease). As I often do

> > when I see movies like that these days, I went

> > online and searched for her name, to see what

> > happened to her after the movie was made etc.

> > Sadly she died last December, but she and her

> > sisters have done an amazing job in getting more

> > and significant research done on ALS.

> > Anyway, I saw mentioning of her memoirs, and went

> > on Amazon.co.uk to buy it. Did so, but then did a

> > search for EDS, to see what was there now. That

> > was when I found this book about EDS (and 8 other

> > books and booklets, most of them familiar), and

> > wondered if any of you have it. What do you think

> > about it? Is it worth $30-40 or something like

> > that? Does it offer any really useful

> > information? I am wondering if somebody haven't

> > posted about it here before... It is obviously

> > some real fat book, 404 pages...

> >

> > Copy of Amazon info about the book below my sig...

> >

> >

> > Aase Marit

> >

> > The Official Patient's Sourcebook on

> > Ehlers-Danlos Syndrome: A Revised and Updated

> > Directory for the Internet Age

> > Icon Health Publications

> >

> >

> > 2 Used & New from £20.78

> >

> >

> > Availability: usually dispatched within 1 to 2 working days

> >

> > See larger photo

> >

> > Edition: Paperback

> >

> > Browse our great selection of Books Special Offers and save ££s today.

> >

> > More Product Details

> > ------------------------------------------------------------------------

> >

> >

> > Product Details:

> > * Paperback 404 pages (August 1, 2002)

> > * Publisher: Icon Health

> > * ISBN: 0597833710

> > * Category(ies): Reference & Languages , Health, Family & Lifestyle

> >

> >

[Guest guest]

> Is this the publication from the UK? I think someone did buy it & report

on

> the EDNF board that is wasn't really much more than they already knew.

They

> said it was very general, nothing that helped them personally.

No, this is not the UK book. The UK book is quite good. The book Aase was

referring to is written by Icon Publications. Within a 3-4 month period,

they released an entire series of " Official Sourcebook " s on a variety of

disorders, diseases, and conditions. Each book appears to be relatively the

same thing with only one or two chapters updated for each unique title.

Really, it was quite pathetic. It was so full of mistakes that I actually

got out my red pen and started marking all the errors!

I wrote to the publisher and they blamed NIH for having wrong information.

They didn't do any research on the disorders and made no effort to verify

any of the information they reported. They didn't even check for

consistency of the information because in one section they refer to the 10

types of EDS and in another, they refer to there only being 6. In my

opinion, this book was nothing more than a horrible attempt by two men to

scam as much money as possible out of people who are desperate for

information.

-Barb

[Guest guest]

I have this book (Someone else bought it for me) and it seems to

mainly be a list of web sites and isn't really very useful.

Sharon

> > Is this the publication from the UK? I think someone did buy it

& report

> on

> > the EDNF board that is wasn't really much more than they already

knew.

> They

> > said it was very general, nothing that helped them personally.

>

> No, this is not the UK book. The UK book is quite good. The book

Aase was

> referring to is written by Icon Publications. Within a 3-4 month

period,

> they released an entire series of " Official Sourcebook " s on a

variety of

> disorders, diseases, and conditions. Each book appears to be

relatively the

> same thing with only one or two chapters updated for each unique

title.

> Really, it was quite pathetic. It was so full of mistakes that I

actually

> got out my red pen and started marking all the errors!

>

> I wrote to the publisher and they blamed NIH for having wrong

information.

> They didn't do any research on the disorders and made no effort to

verify

> any of the information they reported. They didn't even check for

> consistency of the information because in one section they refer to

the 10

> types of EDS and in another, they refer to there only being 6. In

my

> opinion, this book was nothing more than a horrible attempt by two

men to

> scam as much money as possible out of people who are desperate for

> information.

>

> -Barb

[Guest guest]

I have this book (Someone else bought it for me) and it seems to

mainly be a list of web sites and isn't really very useful.

Sharon

> > Is this the publication from the UK? I think someone did buy it

& report

> on

> > the EDNF board that is wasn't really much more than they already

knew.

> They

> > said it was very general, nothing that helped them personally.

>

> No, this is not the UK book. The UK book is quite good. The book

Aase was

> referring to is written by Icon Publications. Within a 3-4 month

period,

> they released an entire series of " Official Sourcebook " s on a

variety of

> disorders, diseases, and conditions. Each book appears to be

relatively the

> same thing with only one or two chapters updated for each unique

title.

> Really, it was quite pathetic. It was so full of mistakes that I

actually

> got out my red pen and started marking all the errors!

>

> I wrote to the publisher and they blamed NIH for having wrong

information.

> They didn't do any research on the disorders and made no effort to

verify

> any of the information they reported. They didn't even check for

> consistency of the information because in one section they refer to

the 10

> types of EDS and in another, they refer to there only being 6. In

my

> opinion, this book was nothing more than a horrible attempt by two

men to

> scam as much money as possible out of people who are desperate for

> information.

>

> -Barb

[Guest guest]

> I have this book (Someone else bought it for me) and it seems to

> mainly be a list of web sites and isn't really very useful.

Yes, and many of the websites are dead links now and much of the EDS info is

WRONG. For example, they still list EDNF as being the PO Box in Michigan,

but EDNF has been in California since 1995 or 1996. They even had the

Michigan phone number listed. Yet in other parts of the book, they list the

right address. They also can't seem to be consistent on the EDS types - 10

or 6 from one section to another. I swear the idiots who wrote it never

looked at what they copied and pasted, nor did they make any attempt at

verifying their so-called " facts " .

-Barb

[Guest guest]

> I have this book (Someone else bought it for me) and it seems to

> mainly be a list of web sites and isn't really very useful.

Yes, and many of the websites are dead links now and much of the EDS info is

WRONG. For example, they still list EDNF as being the PO Box in Michigan,

but EDNF has been in California since 1995 or 1996. They even had the

Michigan phone number listed. Yet in other parts of the book, they list the

right address. They also can't seem to be consistent on the EDS types - 10

or 6 from one section to another. I swear the idiots who wrote it never

looked at what they copied and pasted, nor did they make any attempt at

verifying their so-called " facts " .

-Barb