Re: This is an Emergency!!!

[Guest guest]

Tia,

I can't help much, because I don't live in England any more, but one name that

comes up a lot on the British EDS site is Prof. Bird. I think he's in Leeds.

But, it also sounds like it takes a while to get in to see him.

Sorry, I wish I could be of more help.

Big Hugs,

[Guest guest]

Tia,

I can't help much, because I don't live in England any more, but one name that

comes up a lot on the British EDS site is Prof. Bird. I think he's in Leeds.

But, it also sounds like it takes a while to get in to see him.

Sorry, I wish I could be of more help.

Big Hugs,

[Guest guest]

Tia,

I can't help much, because I don't live in England any more, but one name that

comes up a lot on the British EDS site is Prof. Bird. I think he's in Leeds.

But, it also sounds like it takes a while to get in to see him.

Sorry, I wish I could be of more help.

Big Hugs,

[Guest guest]

Tia,

Did you get my list of doctors in the UK for you to see? They are the best

ones in the UK right now.

Jill

[Guest guest]

Tia, I wish I could help you!! I know of no doctors in the UK, unfortunately!

Have you tried searching the internet?

Love Lana

[Guest guest]

Tia, I wish I could help you!! I know of no doctors in the UK, unfortunately!

Have you tried searching the internet?

Love Lana

[Guest guest]

> Thank you Barb and Jill you are both so kind, and I understand they

> are all very good Doctors and Jill if you would read my original

> e-mail, you will see that I even have your list in there, but the

> question is which one would still wand to help me (long term) when I

> live so far away? Which one would wand to offer me help (if I could

> finally start a

> pregnancy) by advising the Doctor here in Greece (who would definitely

> wand to be informed about this unknown disease)?

>

> Love Tia

Re: This is an Emergency!!!

Tia,

Did you get my list of doctors in the UK for you to see? They are the

best

ones in the UK right now.

Jill

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

_____

[Guest guest]

> Thank you Barb and Jill you are both so kind, and I understand they

> are all very good Doctors and Jill if you would read my original

> e-mail, you will see that I even have your list in there, but the

> question is which one would still wand to help me (long term) when I

> live so far away? Which one would wand to offer me help (if I could

> finally start a

> pregnancy) by advising the Doctor here in Greece (who would definitely

> wand to be informed about this unknown disease)?

>

> Love Tia

Re: This is an Emergency!!!

Tia,

Did you get my list of doctors in the UK for you to see? They are the

best

ones in the UK right now.

Jill

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

_____

[Guest guest]

> Thank you Barb and Jill you are both so kind, and I understand they

> are all very good Doctors and Jill if you would read my original

> e-mail, you will see that I even have your list in there, but the

> question is which one would still wand to help me (long term) when I

> live so far away? Which one would wand to offer me help (if I could

> finally start a

> pregnancy) by advising the Doctor here in Greece (who would definitely

> wand to be informed about this unknown disease)?

>

> Love Tia

Re: This is an Emergency!!!

Tia,

Did you get my list of doctors in the UK for you to see? They are the

best

ones in the UK right now.

Jill

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

_____

[Guest guest]

Call them and explain your situation is my best advise Tia, I can't advise

further about who would be best for you, but their offices can no doubt.

Jill

[Guest guest]

Call them and explain your situation is my best advise Tia, I can't advise

further about who would be best for you, but their offices can no doubt.

Jill

[Guest guest]

Call them and explain your situation is my best advise Tia, I can't advise

further about who would be best for you, but their offices can no doubt.

Jill

[Guest guest]

Dear Jill, I will probably start a.s.a.p. doing that and I know my

questions were quite difficult to be answered but if you have already

read the e-mail I've sent on 7-1-04 I'm sure that you have understood

how much I need any info regarding that trip!

I will go in a foreign country to visit a foreign doctor, the money

needed are a lot, and I just wand to do everything I can to make the

best out of this trip for my medical condition. The doctors here are

backing up, they don't know what to do or say as they see my condition

worsening. They don't know why the blood test examinations have this

picture they just say that it is dangerous for me they way it develops.

I want this " journey of unanswered questions " during my " medical " life

to stop right now. I need to find some answers; what's wrong with me and

what should I do about it? Oh my God I'm sorry I starting

again.. " frustration " is talking!!!

I have some questions for you or anyone willing to help:

1. I am preparing my medical history and I was thinking: what if I sent

it to the doctors before I decide which one I will see (so that he/she

could decide if he/she will see me and be prepared for me)?

2. How should a medical history be?

3. What should it conclude and what should it not?

Well, if you have anything else to advice me, about this future

appointment with the Doctor, I would be more than happy to know.

Love Tia

Re: This is an Emergency!!!

Call them and explain your situation is my best advise Tia, I can't

advise

further about who would be best for you, but their offices can no doubt.

Jill

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

[Guest guest]

Dear Jill, I will probably start a.s.a.p. doing that and I know my

questions were quite difficult to be answered but if you have already

read the e-mail I've sent on 7-1-04 I'm sure that you have understood

how much I need any info regarding that trip!

I will go in a foreign country to visit a foreign doctor, the money

needed are a lot, and I just wand to do everything I can to make the

best out of this trip for my medical condition. The doctors here are

backing up, they don't know what to do or say as they see my condition

worsening. They don't know why the blood test examinations have this

picture they just say that it is dangerous for me they way it develops.

I want this " journey of unanswered questions " during my " medical " life

to stop right now. I need to find some answers; what's wrong with me and

what should I do about it? Oh my God I'm sorry I starting

again.. " frustration " is talking!!!

I have some questions for you or anyone willing to help:

1. I am preparing my medical history and I was thinking: what if I sent

it to the doctors before I decide which one I will see (so that he/she

could decide if he/she will see me and be prepared for me)?

2. How should a medical history be?

3. What should it conclude and what should it not?

Well, if you have anything else to advice me, about this future

appointment with the Doctor, I would be more than happy to know.

Love Tia

Re: This is an Emergency!!!

Call them and explain your situation is my best advise Tia, I can't

advise

further about who would be best for you, but their offices can no doubt.

Jill

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

[Guest guest]

Dear Jill, I will probably start a.s.a.p. doing that and I know my

questions were quite difficult to be answered but if you have already

read the e-mail I've sent on 7-1-04 I'm sure that you have understood

how much I need any info regarding that trip!

I will go in a foreign country to visit a foreign doctor, the money

needed are a lot, and I just wand to do everything I can to make the

best out of this trip for my medical condition. The doctors here are

backing up, they don't know what to do or say as they see my condition

worsening. They don't know why the blood test examinations have this

picture they just say that it is dangerous for me they way it develops.

I want this " journey of unanswered questions " during my " medical " life

to stop right now. I need to find some answers; what's wrong with me and

what should I do about it? Oh my God I'm sorry I starting

again.. " frustration " is talking!!!

I have some questions for you or anyone willing to help:

1. I am preparing my medical history and I was thinking: what if I sent

it to the doctors before I decide which one I will see (so that he/she

could decide if he/she will see me and be prepared for me)?

2. How should a medical history be?

3. What should it conclude and what should it not?

Well, if you have anything else to advice me, about this future

appointment with the Doctor, I would be more than happy to know.

Love Tia

Re: This is an Emergency!!!

Call them and explain your situation is my best advise Tia, I can't

advise

further about who would be best for you, but their offices can no doubt.

Jill

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

[Guest guest]

even thoguh I live in Australia and cannot help you personally, I

just wanted to say that no one can really help you with this I would

think as each doctor is different in each situation and you are the

only person I have heard of travelling like this to see another

doctor ((I wish I could as I have been unbable to find even one

doctor here in Australia who can or will help me (or a lot of the

time even knows of EDS (or RSD))).

Your best bet I would have thought would be to 1. either email them

personally and ask them if they are willing to take you one

(forwarding a one page summary of your condition and problems and

what you wish to get out of your appointments in the UK) and 2. If I

was you I would start with say the TOP guys like the professors

(Bird, GRahame etc) as it is a pregnancy issue as well you may want

to ask other EDS'ers on the board about Ob's and Gyn's who know about

EDS and the EDS high risk preganacy issues and might be willing to

take you on AS WELL (then when you do decide on a general EDS

specialiast (i.e. Rheumatologist) make the Ob/Gyn appoointment(s) on

the same dasy.

The other way is to try to find in a few appointments in the day/week

or how ever long you are going to stay.

This is only my opinion and as I am SO far away myself (even further

than Greece to UK) and do not have any doctors myself to help in my

quest for help, information, management or anything the best I can do

is offer to you my opinion (or what I would do if it was ME who had

the possible opportunity to undertake this medical trek).

Sharon

> > Thank you Barb and Jill you are both so kind, and I understand

they

> > are all very good Doctors and Jill if you would read my original

> > e-mail, you will see that I even have your list in there, but the

> > question is which one would still wand to help me (long term)

when I

> > live so far away? Which one would wand to offer me help (if I

could

> > finally start a

> > pregnancy) by advising the Doctor here in Greece (who would

definitely

> > wand to be informed about this unknown disease)?

> >

> > Love Tia

[Guest guest]

even thoguh I live in Australia and cannot help you personally, I

just wanted to say that no one can really help you with this I would

think as each doctor is different in each situation and you are the

only person I have heard of travelling like this to see another

doctor ((I wish I could as I have been unbable to find even one

doctor here in Australia who can or will help me (or a lot of the

time even knows of EDS (or RSD))).

Your best bet I would have thought would be to 1. either email them

personally and ask them if they are willing to take you one

(forwarding a one page summary of your condition and problems and

what you wish to get out of your appointments in the UK) and 2. If I

was you I would start with say the TOP guys like the professors

(Bird, GRahame etc) as it is a pregnancy issue as well you may want

to ask other EDS'ers on the board about Ob's and Gyn's who know about

EDS and the EDS high risk preganacy issues and might be willing to

take you on AS WELL (then when you do decide on a general EDS

specialiast (i.e. Rheumatologist) make the Ob/Gyn appoointment(s) on

the same dasy.

The other way is to try to find in a few appointments in the day/week

or how ever long you are going to stay.

This is only my opinion and as I am SO far away myself (even further

than Greece to UK) and do not have any doctors myself to help in my

quest for help, information, management or anything the best I can do

is offer to you my opinion (or what I would do if it was ME who had

the possible opportunity to undertake this medical trek).

Sharon

> > Thank you Barb and Jill you are both so kind, and I understand

they

> > are all very good Doctors and Jill if you would read my original

> > e-mail, you will see that I even have your list in there, but the

> > question is which one would still wand to help me (long term)

when I

> > live so far away? Which one would wand to offer me help (if I

could

> > finally start a

> > pregnancy) by advising the Doctor here in Greece (who would

definitely

> > wand to be informed about this unknown disease)?

> >

> > Love Tia

[Guest guest]

even thoguh I live in Australia and cannot help you personally, I

just wanted to say that no one can really help you with this I would

think as each doctor is different in each situation and you are the

only person I have heard of travelling like this to see another

doctor ((I wish I could as I have been unbable to find even one

doctor here in Australia who can or will help me (or a lot of the

time even knows of EDS (or RSD))).

Your best bet I would have thought would be to 1. either email them

personally and ask them if they are willing to take you one

(forwarding a one page summary of your condition and problems and

what you wish to get out of your appointments in the UK) and 2. If I

was you I would start with say the TOP guys like the professors

(Bird, GRahame etc) as it is a pregnancy issue as well you may want

to ask other EDS'ers on the board about Ob's and Gyn's who know about

EDS and the EDS high risk preganacy issues and might be willing to

take you on AS WELL (then when you do decide on a general EDS

specialiast (i.e. Rheumatologist) make the Ob/Gyn appoointment(s) on

the same dasy.

The other way is to try to find in a few appointments in the day/week

or how ever long you are going to stay.

This is only my opinion and as I am SO far away myself (even further

than Greece to UK) and do not have any doctors myself to help in my

quest for help, information, management or anything the best I can do

is offer to you my opinion (or what I would do if it was ME who had

the possible opportunity to undertake this medical trek).

Sharon

> > Thank you Barb and Jill you are both so kind, and I understand

they

> > are all very good Doctors and Jill if you would read my original

> > e-mail, you will see that I even have your list in there, but the

> > question is which one would still wand to help me (long term)

when I

> > live so far away? Which one would wand to offer me help (if I

could

> > finally start a

> > pregnancy) by advising the Doctor here in Greece (who would

definitely

> > wand to be informed about this unknown disease)?

> >

> > Love Tia

[Guest guest]

1. I am preparing my medical history and I was thinking: what if I

sent it to the doctors before I decide which one I will see (so that

he/she could decide if he/she will see me and be prepared for me)?

If you wish Tia I could offer you a blanked out copy of my medical

history (What I carry and email/send to my doctors and to the ER and

for ambulances etc).

If you have a look at the email I just posted to you about this, it

shows you that I recommend that you contact them (ALL of the doctors

long before going to see who will take you on).

2. How should a medical history be?

I got the bare bones of how to make my Medical history from

http://www.ehlers-danlos.org/Info%20Sheets/medical_history.htm and

then added and removed things that I thought were related to me and

MY condition etc.

3. What should it include and what should it not?

If you email me on Shazzinoz@... I will send you a copy of my

medical history (with my PRIVATE stuff removed).

Sharon

HEDS (we think)

Australia

> Re: This is an Emergency!!!

>

> Call them and explain your situation is my best advise Tia, I can't

> advise

> further about who would be best for you, but their offices can no

doubt.

>

> Jill

[Guest guest]

1. I am preparing my medical history and I was thinking: what if I

sent it to the doctors before I decide which one I will see (so that

he/she could decide if he/she will see me and be prepared for me)?

If you wish Tia I could offer you a blanked out copy of my medical

history (What I carry and email/send to my doctors and to the ER and

for ambulances etc).

If you have a look at the email I just posted to you about this, it

shows you that I recommend that you contact them (ALL of the doctors

long before going to see who will take you on).

2. How should a medical history be?

I got the bare bones of how to make my Medical history from

http://www.ehlers-danlos.org/Info%20Sheets/medical_history.htm and

then added and removed things that I thought were related to me and

MY condition etc.

3. What should it include and what should it not?

If you email me on Shazzinoz@... I will send you a copy of my

medical history (with my PRIVATE stuff removed).

Sharon

HEDS (we think)

Australia

> Re: This is an Emergency!!!

>

> Call them and explain your situation is my best advise Tia, I can't

> advise

> further about who would be best for you, but their offices can no

doubt.

>

> Jill

[Guest guest]

1. I am preparing my medical history and I was thinking: what if I

sent it to the doctors before I decide which one I will see (so that

he/she could decide if he/she will see me and be prepared for me)?

If you wish Tia I could offer you a blanked out copy of my medical

history (What I carry and email/send to my doctors and to the ER and

for ambulances etc).

If you have a look at the email I just posted to you about this, it

shows you that I recommend that you contact them (ALL of the doctors

long before going to see who will take you on).

2. How should a medical history be?

I got the bare bones of how to make my Medical history from

http://www.ehlers-danlos.org/Info%20Sheets/medical_history.htm and

then added and removed things that I thought were related to me and

MY condition etc.

3. What should it include and what should it not?

If you email me on Shazzinoz@... I will send you a copy of my

medical history (with my PRIVATE stuff removed).

Sharon

HEDS (we think)

Australia

> Re: This is an Emergency!!!

>

> Call them and explain your situation is my best advise Tia, I can't

> advise

> further about who would be best for you, but their offices can no

doubt.

>

> Jill

[Guest guest]

" This is only my opinion and as I am SO far away myself (even further

than Greece to UK) and do not have any doctors myself to help in my

quest for help, information, management or anything the best I can do is

offer to you my opinion (or what I would do if it was ME who had the

possible opportunity to undertake this medical trek). " Sharon

My lovely Sharon, firstly I'm sorry it took me so long to reply and I

need to thank you so much for everything you've written, it is and will

be more than beneficial to me and I totally agree with your opinion

secondly, you should know that it's YOUR personal or any personal

opinion that I'm seeking to hear, what ever that is, you see it is like

a brainstorming for me right now, from people that know exactly how I

feel or what I need and this helps me a lot to decide what I should do,

because, on my own, I'm lost here.

" I wish I could as I have been unable to find even one doctor here in

Australia who can or will help me " Sharon

I dear to say that I thought I was a rare case of a patient without a

doctor near me and I always blamed my country for that since we are only

about 10.000.000 people plus me10.000.001 with diagnosed EDS III .ha,

ha, ha. (there could be others, but they may not know it yet, since it

took 21 years for the docs here to find out what's wrong with me) but

Australia too!!! I'm so sorry to hear that, I wish I could do something,

but I feel that we are in the same shoes. uggggggggrrrrrr ....I can

understand your frustration!!!!!!!

And that raises the question; how come the UK has so many doctors

specialized in EDS and a support group for EDSrs too? Are there more

cases of EDS there? Of course I must say that research plays a big role

in the understanding of a rare conditions and this is something that the

UK is a king on as I imagine USA is too!

Love and hugs

Tia

P.S. Thanks again!

[Guest guest]

" This is only my opinion and as I am SO far away myself (even further

than Greece to UK) and do not have any doctors myself to help in my

quest for help, information, management or anything the best I can do is

offer to you my opinion (or what I would do if it was ME who had the

possible opportunity to undertake this medical trek). " Sharon

My lovely Sharon, firstly I'm sorry it took me so long to reply and I

need to thank you so much for everything you've written, it is and will

be more than beneficial to me and I totally agree with your opinion

secondly, you should know that it's YOUR personal or any personal

opinion that I'm seeking to hear, what ever that is, you see it is like

a brainstorming for me right now, from people that know exactly how I

feel or what I need and this helps me a lot to decide what I should do,

because, on my own, I'm lost here.

" I wish I could as I have been unable to find even one doctor here in

Australia who can or will help me " Sharon

I dear to say that I thought I was a rare case of a patient without a

doctor near me and I always blamed my country for that since we are only

about 10.000.000 people plus me10.000.001 with diagnosed EDS III .ha,

ha, ha. (there could be others, but they may not know it yet, since it

took 21 years for the docs here to find out what's wrong with me) but

Australia too!!! I'm so sorry to hear that, I wish I could do something,

but I feel that we are in the same shoes. uggggggggrrrrrr ....I can

understand your frustration!!!!!!!

And that raises the question; how come the UK has so many doctors

specialized in EDS and a support group for EDSrs too? Are there more

cases of EDS there? Of course I must say that research plays a big role

in the understanding of a rare conditions and this is something that the

UK is a king on as I imagine USA is too!

Love and hugs

Tia

P.S. Thanks again!

[Guest guest]

I think that UK has so many doc's is because someone there had an

interest (in the medical profession) and decided to research it and

then others took this on as well, it could be that it all started

from one patient or family or that the person had a friend or family

member as a child or adult who had EDS and this got them interested

enough to decide to research and specialise in it, you never know.

You must remember that in comparison to a lot of places Australai is

SMALL (While Greece is smaller Australia has only 20,000,000) and a

LOT of Australia is uninhabited (most people live in bands around the

coasts of Australia and inland for a bit), I actually live in

Canberra which while it is the political and stated Capital of

Australia, Sydney and Melbourne etc seem to have better specialists

but even there I have had NO luck, I even saw the guy who was

supposed to be the top connective tissue displasia doctor in

Australia and found him rude, arrogant and totally UN informed (he

told me as my hands didn't flop back and sit against my forearms

(Unassisted) then I wasn't hypermobile ENOUGH (he did say I was

slightly hypermobile or at the upper limits of normal in my thumbs

and trunk) and that I must be hypermobile and have my other EDS

symptoms as I must have an Autuoimmune disease (strictly because my

Mum had a couple) and I have recently had this rulled OUT by another

so called specialist who said it was A hypermobility syndrome (she

didn't acutally say HMS just that it was one of the many

hypermobility sundromes and she (a Rheumatologist) wasn't in the

SLIGHTEST interested in helping me or even in looking at me really)

and NEVER wants to see me again.

Sharon

I will send you my medical history off line to your private email OK.

Good Luck my EDS friend in finding someone who can help

Sharon

> " This is only my opinion and as I am SO far away myself (even

further

> than Greece to UK) and do not have any doctors myself to help in my

> quest for help, information, management or anything the best I can

do is

> offer to you my opinion (or what I would do if it was ME who had the

> possible opportunity to undertake this medical trek). " Sharon

>

> My lovely Sharon, firstly I'm sorry it took me so long to reply and

I

> need to thank you so much for everything you've written, it is and

will

> be more than beneficial to me and I totally agree with your opinion

> secondly, you should know that it's YOUR personal or any personal

> opinion that I'm seeking to hear, what ever that is, you see it is

like

> a brainstorming for me right now, from people that know exactly how

I

> feel or what I need and this helps me a lot to decide what I should

do,

> because, on my own, I'm lost here.

>

> " I wish I could as I have been unable to find even one doctor here

in

> Australia who can or will help me " Sharon

>

> I dear to say that I thought I was a rare case of a patient without

a

> doctor near me and I always blamed my country for that since we are

only

> about 10.000.000 people plus me10.000.001 with diagnosed EDS

III .ha,

> ha, ha. (there could be others, but they may not know it yet,

since it

> took 21 years for the docs here to find out what's wrong with me)

but

> Australia too!!! I'm so sorry to hear that, I wish I could do

something,

> but I feel that we are in the same shoes. uggggggggrrrrrr ....I can

> understand your frustration!!!!!!!

>

> And that raises the question; how come the UK has so many doctors

> specialized in EDS and a support group for EDSrs too? Are there more

> cases of EDS there? Of course I must say that research plays a big

role

> in the understanding of a rare conditions and this is something

that the

> UK is a king on as I imagine USA is too!

>

>

> Love and hugs

> Tia

>

> P.S. Thanks again!

>

>

>

>

>

[Guest guest]

I think that UK has so many doc's is because someone there had an

interest (in the medical profession) and decided to research it and

then others took this on as well, it could be that it all started

from one patient or family or that the person had a friend or family

member as a child or adult who had EDS and this got them interested

enough to decide to research and specialise in it, you never know.

You must remember that in comparison to a lot of places Australai is

SMALL (While Greece is smaller Australia has only 20,000,000) and a

LOT of Australia is uninhabited (most people live in bands around the

coasts of Australia and inland for a bit), I actually live in

Canberra which while it is the political and stated Capital of

Australia, Sydney and Melbourne etc seem to have better specialists

but even there I have had NO luck, I even saw the guy who was

supposed to be the top connective tissue displasia doctor in

Australia and found him rude, arrogant and totally UN informed (he

told me as my hands didn't flop back and sit against my forearms

(Unassisted) then I wasn't hypermobile ENOUGH (he did say I was

slightly hypermobile or at the upper limits of normal in my thumbs

and trunk) and that I must be hypermobile and have my other EDS

symptoms as I must have an Autuoimmune disease (strictly because my

Mum had a couple) and I have recently had this rulled OUT by another

so called specialist who said it was A hypermobility syndrome (she

didn't acutally say HMS just that it was one of the many

hypermobility sundromes and she (a Rheumatologist) wasn't in the

SLIGHTEST interested in helping me or even in looking at me really)

and NEVER wants to see me again.

Sharon

I will send you my medical history off line to your private email OK.

Good Luck my EDS friend in finding someone who can help

Sharon

> " This is only my opinion and as I am SO far away myself (even

further

> than Greece to UK) and do not have any doctors myself to help in my

> quest for help, information, management or anything the best I can

do is

> offer to you my opinion (or what I would do if it was ME who had the

> possible opportunity to undertake this medical trek). " Sharon

>

> My lovely Sharon, firstly I'm sorry it took me so long to reply and

I

> need to thank you so much for everything you've written, it is and

will

> be more than beneficial to me and I totally agree with your opinion

> secondly, you should know that it's YOUR personal or any personal

> opinion that I'm seeking to hear, what ever that is, you see it is

like

> a brainstorming for me right now, from people that know exactly how

I

> feel or what I need and this helps me a lot to decide what I should

do,

> because, on my own, I'm lost here.

>

> " I wish I could as I have been unable to find even one doctor here

in

> Australia who can or will help me " Sharon

>

> I dear to say that I thought I was a rare case of a patient without

a

> doctor near me and I always blamed my country for that since we are

only

> about 10.000.000 people plus me10.000.001 with diagnosed EDS

III .ha,

> ha, ha. (there could be others, but they may not know it yet,

since it

> took 21 years for the docs here to find out what's wrong with me)

but

> Australia too!!! I'm so sorry to hear that, I wish I could do

something,

> but I feel that we are in the same shoes. uggggggggrrrrrr ....I can

> understand your frustration!!!!!!!

>

> And that raises the question; how come the UK has so many doctors

> specialized in EDS and a support group for EDSrs too? Are there more

> cases of EDS there? Of course I must say that research plays a big

role

> in the understanding of a rare conditions and this is something

that the

> UK is a king on as I imagine USA is too!

>

>

> Love and hugs

> Tia

>

> P.S. Thanks again!

>

>

>

>

>