Re: This is an Emergency!!!

[Guest guest]

Sharon you are probably right! We both face difficulties in finding a

doctor. I got so agree after I finished reading you e-mail, how can

doctors be so COLD? I've been through similar situations and that is the

reason I will not stand this anymore and I will search for a solution

(if there is one).

I just wish there could be one for you too, and I so sorry I can't help

you!!! As I understand the major problem is that you are not yet

diagnosed. Have you asked in CEDA; maybe there is someone specialized in

Australia.

Thank you so much I find you medical history very helpful!!!!

Hugs Tia

Re: This is an Emergency!!!

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]

Sharon you are probably right! We both face difficulties in finding a

doctor. I got so agree after I finished reading you e-mail, how can

doctors be so COLD? I've been through similar situations and that is the

reason I will not stand this anymore and I will search for a solution

(if there is one).

I just wish there could be one for you too, and I so sorry I can't help

you!!! As I understand the major problem is that you are not yet

diagnosed. Have you asked in CEDA; maybe there is someone specialized in

Australia.

Thank you so much I find you medical history very helpful!!!!

Hugs Tia

Re: This is an Emergency!!!

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]

Sharon you are probably right! We both face difficulties in finding a

doctor. I got so agree after I finished reading you e-mail, how can

doctors be so COLD? I've been through similar situations and that is the

reason I will not stand this anymore and I will search for a solution

(if there is one).

I just wish there could be one for you too, and I so sorry I can't help

you!!! As I understand the major problem is that you are not yet

diagnosed. Have you asked in CEDA; maybe there is someone specialized in

Australia.

Thank you so much I find you medical history very helpful!!!!

Hugs Tia

Re: This is an Emergency!!!

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]

My dear Fay - replying of list

Let me start with a BIG SORRY for the delayed " thank you " that I owe

you, for the unbelievable HELP you gave me with your post!

Regarding your questions here are my answers:

1. Perhaps your doctors in Greece could do some research in medical

literature and on the internet.

2. But, I am lucky in that I happen to live near a very good specialist

maternity hospital - is there one near you in Greece that your GP can

refer you to?

I live in an island (80.000 people), our doctors are grate and our

hospital is big and new but the interest in research is poor. I can't

possibly visit all the doctors in Greece to find out who knows about EDS

or is willing to learn (although I've seen all the best rheumatologists

in Greece).

But I can visit a doctor who I definitely know that is entirely involved

in researching EDS.

3. I am not quite sure why you are coming to the UK to see a doctor.

Is it to have a specific operation carried out?

My sort story: Years ago, when the problems started, and after I was

misdiagnosed (rheumatoid arthritis) and treated with lots of wrong meds

, only one, out of the 6 best doctors-professors in Greece that exam me,

knew and diagnosed this syndrome, I was his first case, but then he

became very old.

After I became a member of the UK's EDS support group they told me that

one of the Best doctors in our field was Greek, Dr. Tsipouras (he is

involved in research about EDS, he wrote a lot of articles and he is a

doctor of genetics) and that he could do a accurate diagnose of the

syndrome and so did he, bad the problem is that he only saw me ones and

he lives very far away (USA). At least he confirmed the existing

diagnose of EDS type III. We were in a contact (telephonically) with the

Doctor who I must say has been so kind to me, providing all this info.

But for the past 3 years I have no doctor, except one in my town who

prescribes me my meds but doesn't really wand to get involved in

research. And finally doesn't know what to do with my pain and all the

side effects I get from the meds he prescribes.

My medical problems that can't be treated or explained here are:

* A percentage loss of peripheral vision- damage deep in my eyes

- (1996) which was treated and stabilized with cortisone pills and eye

drops (the doctors here said that it could be from a medicine called

PLAQENIL that I was taking for 6 months) but again they are not sure and

they don't know if it could happen again.

* I have a continuous fall in my white blood cells and in some

other values that are very crucial for our health (what I have is called

" neutropenia " ), right after I started the meds (11 years ago). From the

normal values they wend to 2500(min)-3300(maximum). Nobody knows why,

some doctors' say that this might be due to the meds I once took, some

others simply don't know! They don't understand why it happens but they

worry me by telling me that it is dangerous.

* I have spasms that don't start alone as I'm relaxed in a

resting position but they happen involuntary whenever I use a muscle for

example if I go down the stairs my legs go crazy (trembling) or when I'

m lying supinely on the bed and lift my leg to 45 degrees it sakes up

and down but again when I'm relaxed nothing happens. When I work with my

eyes and try to focus, they " fly " away (involuntary) they don't fully

obey. My ophthalmologist gave me some exercise to do for the eyes.

All three of the doctors that exam me for this matter (orthopedic,

neurologist, and ophthalmologist) said that I should finally meet a

specialist and do an in depth, examination so that they could know what

to do here. The hematologist, the GI and the Gynecologist doctor

recommended the same.

I'm in pain and fear for the future and every day I feel more tired, it

is frustrating, I am only 30 years old.

So I need A DOCTOR, who would know everything about EDS, become my

doctor and finally answer me some questions that I could educate my

doctors too, and lastly help me start a pregnancy. My GY doctor gets

terrified when I mention the word pregnancy; he says I should better

forget it, when I know that other EDSrs have lots of children.

4. This leads me to my next question. Is Greece a full member of the EU?

If it is (and I am not sure about this) you can travel anywhere in the

EU and get medical treatment free.

Yes Greece is a full member of the EU and our system is about the same

as the UK's system and I also know that everybody belonging in the EU

gets free medical treatment but what I found out was that our NHI could

caver the expenses for a private doctor as well, as long as it can be

proven that I can't be treated here. Of course it is a long battle until

I do that since it is a long process (NHI doctors examining me and lots

of papers) but I'm more than willing to do that.

* They key is getting your referral letter in the first place.

Since you have probably understood, I have a lot of doctors who are more

than willing to do that!!! But thank you so much for the tip; I didn't

know that is was so important. I have already asked one of my doctors

and he will prepare it for me. Thanks again!

I hope I've answered your questions, you definitely answered mine, I

also hope you could understand my poor English and I wish for any

comment or advise about my situation or decision coming in the UK.

I wish you, from my heart, a great health and your dreams to come true

and I wish I could some day be of any help for you too!

Love Tia

P.S

* I would recommend you GP in Greece or your specialist use their

position as your doctor to make enquiries on your behalf about either

specialists in Greece who are prepared to do research and work with

you, or doctors abroad- then your doctors can make the introductions

for you and deal with the referral process.

How does this work?

[Guest guest]

My dear Fay - replying of list

Let me start with a BIG SORRY for the delayed " thank you " that I owe

you, for the unbelievable HELP you gave me with your post!

Regarding your questions here are my answers:

1. Perhaps your doctors in Greece could do some research in medical

literature and on the internet.

2. But, I am lucky in that I happen to live near a very good specialist

maternity hospital - is there one near you in Greece that your GP can

refer you to?

I live in an island (80.000 people), our doctors are grate and our

hospital is big and new but the interest in research is poor. I can't

possibly visit all the doctors in Greece to find out who knows about EDS

or is willing to learn (although I've seen all the best rheumatologists

in Greece).

But I can visit a doctor who I definitely know that is entirely involved

in researching EDS.

3. I am not quite sure why you are coming to the UK to see a doctor.

Is it to have a specific operation carried out?

My sort story: Years ago, when the problems started, and after I was

misdiagnosed (rheumatoid arthritis) and treated with lots of wrong meds

, only one, out of the 6 best doctors-professors in Greece that exam me,

knew and diagnosed this syndrome, I was his first case, but then he

became very old.

After I became a member of the UK's EDS support group they told me that

one of the Best doctors in our field was Greek, Dr. Tsipouras (he is

involved in research about EDS, he wrote a lot of articles and he is a

doctor of genetics) and that he could do a accurate diagnose of the

syndrome and so did he, bad the problem is that he only saw me ones and

he lives very far away (USA). At least he confirmed the existing

diagnose of EDS type III. We were in a contact (telephonically) with the

Doctor who I must say has been so kind to me, providing all this info.

But for the past 3 years I have no doctor, except one in my town who

prescribes me my meds but doesn't really wand to get involved in

research. And finally doesn't know what to do with my pain and all the

side effects I get from the meds he prescribes.

My medical problems that can't be treated or explained here are:

* A percentage loss of peripheral vision- damage deep in my eyes

- (1996) which was treated and stabilized with cortisone pills and eye

drops (the doctors here said that it could be from a medicine called

PLAQENIL that I was taking for 6 months) but again they are not sure and

they don't know if it could happen again.

* I have a continuous fall in my white blood cells and in some

other values that are very crucial for our health (what I have is called

" neutropenia " ), right after I started the meds (11 years ago). From the

normal values they wend to 2500(min)-3300(maximum). Nobody knows why,

some doctors' say that this might be due to the meds I once took, some

others simply don't know! They don't understand why it happens but they

worry me by telling me that it is dangerous.

* I have spasms that don't start alone as I'm relaxed in a

resting position but they happen involuntary whenever I use a muscle for

example if I go down the stairs my legs go crazy (trembling) or when I'

m lying supinely on the bed and lift my leg to 45 degrees it sakes up

and down but again when I'm relaxed nothing happens. When I work with my

eyes and try to focus, they " fly " away (involuntary) they don't fully

obey. My ophthalmologist gave me some exercise to do for the eyes.

All three of the doctors that exam me for this matter (orthopedic,

neurologist, and ophthalmologist) said that I should finally meet a

specialist and do an in depth, examination so that they could know what

to do here. The hematologist, the GI and the Gynecologist doctor

recommended the same.

I'm in pain and fear for the future and every day I feel more tired, it

is frustrating, I am only 30 years old.

So I need A DOCTOR, who would know everything about EDS, become my

doctor and finally answer me some questions that I could educate my

doctors too, and lastly help me start a pregnancy. My GY doctor gets

terrified when I mention the word pregnancy; he says I should better

forget it, when I know that other EDSrs have lots of children.

4. This leads me to my next question. Is Greece a full member of the EU?

If it is (and I am not sure about this) you can travel anywhere in the

EU and get medical treatment free.

Yes Greece is a full member of the EU and our system is about the same

as the UK's system and I also know that everybody belonging in the EU

gets free medical treatment but what I found out was that our NHI could

caver the expenses for a private doctor as well, as long as it can be

proven that I can't be treated here. Of course it is a long battle until

I do that since it is a long process (NHI doctors examining me and lots

of papers) but I'm more than willing to do that.

* They key is getting your referral letter in the first place.

Since you have probably understood, I have a lot of doctors who are more

than willing to do that!!! But thank you so much for the tip; I didn't

know that is was so important. I have already asked one of my doctors

and he will prepare it for me. Thanks again!

I hope I've answered your questions, you definitely answered mine, I

also hope you could understand my poor English and I wish for any

comment or advise about my situation or decision coming in the UK.

I wish you, from my heart, a great health and your dreams to come true

and I wish I could some day be of any help for you too!

Love Tia

P.S

* I would recommend you GP in Greece or your specialist use their

position as your doctor to make enquiries on your behalf about either

specialists in Greece who are prepared to do research and work with

you, or doctors abroad- then your doctors can make the introductions

for you and deal with the referral process.

How does this work?

[Guest guest]

My dear Fay - replying of list

Let me start with a BIG SORRY for the delayed " thank you " that I owe

you, for the unbelievable HELP you gave me with your post!

Regarding your questions here are my answers:

1. Perhaps your doctors in Greece could do some research in medical

literature and on the internet.

2. But, I am lucky in that I happen to live near a very good specialist

maternity hospital - is there one near you in Greece that your GP can

refer you to?

I live in an island (80.000 people), our doctors are grate and our

hospital is big and new but the interest in research is poor. I can't

possibly visit all the doctors in Greece to find out who knows about EDS

or is willing to learn (although I've seen all the best rheumatologists

in Greece).

But I can visit a doctor who I definitely know that is entirely involved

in researching EDS.

3. I am not quite sure why you are coming to the UK to see a doctor.

Is it to have a specific operation carried out?

My sort story: Years ago, when the problems started, and after I was

misdiagnosed (rheumatoid arthritis) and treated with lots of wrong meds

, only one, out of the 6 best doctors-professors in Greece that exam me,

knew and diagnosed this syndrome, I was his first case, but then he

became very old.

After I became a member of the UK's EDS support group they told me that

one of the Best doctors in our field was Greek, Dr. Tsipouras (he is

involved in research about EDS, he wrote a lot of articles and he is a

doctor of genetics) and that he could do a accurate diagnose of the

syndrome and so did he, bad the problem is that he only saw me ones and

he lives very far away (USA). At least he confirmed the existing

diagnose of EDS type III. We were in a contact (telephonically) with the

Doctor who I must say has been so kind to me, providing all this info.

But for the past 3 years I have no doctor, except one in my town who

prescribes me my meds but doesn't really wand to get involved in

research. And finally doesn't know what to do with my pain and all the

side effects I get from the meds he prescribes.

My medical problems that can't be treated or explained here are:

* A percentage loss of peripheral vision- damage deep in my eyes

- (1996) which was treated and stabilized with cortisone pills and eye

drops (the doctors here said that it could be from a medicine called

PLAQENIL that I was taking for 6 months) but again they are not sure and

they don't know if it could happen again.

* I have a continuous fall in my white blood cells and in some

other values that are very crucial for our health (what I have is called

" neutropenia " ), right after I started the meds (11 years ago). From the

normal values they wend to 2500(min)-3300(maximum). Nobody knows why,

some doctors' say that this might be due to the meds I once took, some

others simply don't know! They don't understand why it happens but they

worry me by telling me that it is dangerous.

* I have spasms that don't start alone as I'm relaxed in a

resting position but they happen involuntary whenever I use a muscle for

example if I go down the stairs my legs go crazy (trembling) or when I'

m lying supinely on the bed and lift my leg to 45 degrees it sakes up

and down but again when I'm relaxed nothing happens. When I work with my

eyes and try to focus, they " fly " away (involuntary) they don't fully

obey. My ophthalmologist gave me some exercise to do for the eyes.

All three of the doctors that exam me for this matter (orthopedic,

neurologist, and ophthalmologist) said that I should finally meet a

specialist and do an in depth, examination so that they could know what

to do here. The hematologist, the GI and the Gynecologist doctor

recommended the same.

I'm in pain and fear for the future and every day I feel more tired, it

is frustrating, I am only 30 years old.

So I need A DOCTOR, who would know everything about EDS, become my

doctor and finally answer me some questions that I could educate my

doctors too, and lastly help me start a pregnancy. My GY doctor gets

terrified when I mention the word pregnancy; he says I should better

forget it, when I know that other EDSrs have lots of children.

4. This leads me to my next question. Is Greece a full member of the EU?

If it is (and I am not sure about this) you can travel anywhere in the

EU and get medical treatment free.

Yes Greece is a full member of the EU and our system is about the same

as the UK's system and I also know that everybody belonging in the EU

gets free medical treatment but what I found out was that our NHI could

caver the expenses for a private doctor as well, as long as it can be

proven that I can't be treated here. Of course it is a long battle until

I do that since it is a long process (NHI doctors examining me and lots

of papers) but I'm more than willing to do that.

* They key is getting your referral letter in the first place.

Since you have probably understood, I have a lot of doctors who are more

than willing to do that!!! But thank you so much for the tip; I didn't

know that is was so important. I have already asked one of my doctors

and he will prepare it for me. Thanks again!

I hope I've answered your questions, you definitely answered mine, I

also hope you could understand my poor English and I wish for any

comment or advise about my situation or decision coming in the UK.

I wish you, from my heart, a great health and your dreams to come true

and I wish I could some day be of any help for you too!

Love Tia

P.S

* I would recommend you GP in Greece or your specialist use their

position as your doctor to make enquiries on your behalf about either

specialists in Greece who are prepared to do research and work with

you, or doctors abroad- then your doctors can make the introductions

for you and deal with the referral process.

How does this work?

[Guest guest]

Tia,

Given that you are travelling a distance, it is not at all unreasonable to

ask that you be able to correspond with a doctor that you might see by

e-mail first, or have your doctor call them to make sure that your visit

would be worthwhile. I have a few members who do this and I highly

recommend this - in this day of e-mail, I dare say there isn't a doctor out

there that you can not contact this way, but this is even more important for

you, who would have to travel far!

Jill

[Guest guest]

>

> but this is even more important for you, who would have to travel

far!

> Jill

Say that again, Jill!!!!!!! That's so true. (My expression: I'm

moving my head up and down, right now). Thank you my friend and

goodnight. As for me it is 4:00…. no sleep for me tonight!

Tia

[Guest guest]

>

> but this is even more important for you, who would have to travel

far!

> Jill

Say that again, Jill!!!!!!! That's so true. (My expression: I'm

moving my head up and down, right now). Thank you my friend and

goodnight. As for me it is 4:00…. no sleep for me tonight!

Tia

[Guest guest]

>

> but this is even more important for you, who would have to travel

far!

> Jill

Say that again, Jill!!!!!!! That's so true. (My expression: I'm

moving my head up and down, right now). Thank you my friend and

goodnight. As for me it is 4:00…. no sleep for me tonight!

Tia

[Guest guest]

Dear Tia,

I am so pleased that I have been able to be of some small help to you.

I can see now why you need to see a doctor from outside of Greece.

> So I need A DOCTOR, who would know everything about EDS, become my

> doctor and finally answer me some questions that I could educate my

> doctors too, and lastly help me start a pregnancy.

I sorry that I cannot recommend any doctors from the list that Jill

gave you. I live in the city of Southampton in southern Hampshire,

which is 70 miles from London, so if you arrive in the UK it is quite

likely that you will be in this area. Therefore I can recommend the

pregnancy specialist that I use. He works at the specialist maternity

hospital that I mentioned. His name and the main hospital contact

details are:

Dr Howe

Princess Anne Hospital

ford Road

Southampton SO15 5YA

Telephone +44 (0) 23 8077 7222

As I said before, he specializes in high risk pregnancies. I do not

believe that he had dealt with EDS until he saw me, but he is very

willing to learn and has become very well informed. He saw me before I

became pregnant to discuss how he would manage me. if he is not able to

see you himself, i am sure he could recommend someone who can. I

totally understand your desire to get a pregnancy started.

> Yes Greece is a full member of the EU and our system is about the same

> as the UK's system and I also know that everybody belonging in the EU

> gets free medical treatment but what I found out was that our NHI could

> caver the expenses for a private doctor as well, as long as it can be

> proven that I can't be treated here.

If is great that Greece is a full EU member. It sounds excellent that

they can also cover the cost of private treatment as well. In terms of

private treatment in the UK - our main system of private hospital is

run by BUPA. They offer many services and have a lot of hospitals -

some offering slightly different things to others. My nearest one is

in Southampton (4 miles from my home). It is also across the road from

the Princess Anne maternity hospital that I recommended, and our

general NHS hospital. The BUPA hospital is excellent. Below is the link

to the hospital and you can search on services and consultants that are

available and obtain details about their specific interests. You can

also contact the hospital and the consultants via email (in some cases)

or by calling their private secretaries:

http://www.bupahospitals.co.uk/southampton/hospital_southampton.asp

You can also look up all the other UK BUPA hospitals, if you are not

intending to be in the Hampshire area for your visit.

> I also hope you could understand my poor English and I wish for any

> comment or advise about my situation or decision coming in the UK.

Your English is excellent. In fact you write in English better than a

lot of English people :-) I think that given the situation, you are

doing the correct thing by coming to the UK to see our doctors. Please

let me know how you progress with your planning for the visit and do

let me know if I can be of any further help to you.

Lots of love,

Fay.

fay@...

> I would recommend you GP in Greece or your specialist use their

> position as your doctor to make enquiries on your behalf about either

> specialists in Greece who are prepared to do research and work with

> you, or doctors abroad- then your doctors can make the introductions

> for you and deal with the referral process.

> How does this work?

I thought that maybe your GP in Greece could either telephone, email or

write to some of the doctors that you wish to see in the UK to explain

your situation and see if the UK doctor would agree to see you. This

may make it easier and quicker for you to get an appointment with them.

[Guest guest]

Dear Tia,

I am so pleased that I have been able to be of some small help to you.

I can see now why you need to see a doctor from outside of Greece.

> So I need A DOCTOR, who would know everything about EDS, become my

> doctor and finally answer me some questions that I could educate my

> doctors too, and lastly help me start a pregnancy.

I sorry that I cannot recommend any doctors from the list that Jill

gave you. I live in the city of Southampton in southern Hampshire,

which is 70 miles from London, so if you arrive in the UK it is quite

likely that you will be in this area. Therefore I can recommend the

pregnancy specialist that I use. He works at the specialist maternity

hospital that I mentioned. His name and the main hospital contact

details are:

Dr Howe

Princess Anne Hospital

ford Road

Southampton SO15 5YA

Telephone +44 (0) 23 8077 7222

As I said before, he specializes in high risk pregnancies. I do not

believe that he had dealt with EDS until he saw me, but he is very

willing to learn and has become very well informed. He saw me before I

became pregnant to discuss how he would manage me. if he is not able to

see you himself, i am sure he could recommend someone who can. I

totally understand your desire to get a pregnancy started.

> Yes Greece is a full member of the EU and our system is about the same

> as the UK's system and I also know that everybody belonging in the EU

> gets free medical treatment but what I found out was that our NHI could

> caver the expenses for a private doctor as well, as long as it can be

> proven that I can't be treated here.

If is great that Greece is a full EU member. It sounds excellent that

they can also cover the cost of private treatment as well. In terms of

private treatment in the UK - our main system of private hospital is

run by BUPA. They offer many services and have a lot of hospitals -

some offering slightly different things to others. My nearest one is

in Southampton (4 miles from my home). It is also across the road from

the Princess Anne maternity hospital that I recommended, and our

general NHS hospital. The BUPA hospital is excellent. Below is the link

to the hospital and you can search on services and consultants that are

available and obtain details about their specific interests. You can

also contact the hospital and the consultants via email (in some cases)

or by calling their private secretaries:

http://www.bupahospitals.co.uk/southampton/hospital_southampton.asp

You can also look up all the other UK BUPA hospitals, if you are not

intending to be in the Hampshire area for your visit.

> I also hope you could understand my poor English and I wish for any

> comment or advise about my situation or decision coming in the UK.

Your English is excellent. In fact you write in English better than a

lot of English people :-) I think that given the situation, you are

doing the correct thing by coming to the UK to see our doctors. Please

let me know how you progress with your planning for the visit and do

let me know if I can be of any further help to you.

Lots of love,

Fay.

fay@...

> I would recommend you GP in Greece or your specialist use their

> position as your doctor to make enquiries on your behalf about either

> specialists in Greece who are prepared to do research and work with

> you, or doctors abroad- then your doctors can make the introductions

> for you and deal with the referral process.

> How does this work?

I thought that maybe your GP in Greece could either telephone, email or

write to some of the doctors that you wish to see in the UK to explain

your situation and see if the UK doctor would agree to see you. This

may make it easier and quicker for you to get an appointment with them.