Re: was Pale skin and blue sclera/now thinking young gettign older

[Guest guest]

Hi Cindy H, yes I am very happy to be 50. It was strange the way I felt when

I turned 50. I actually felt much wiser, more peaceful, joyful and satisfied

except for the delightful EDS LOL !!!!!!! I am only 4'91/2' " , I was 4'93/4 "

but have lost a 1/4 " . Could be even less now!!! I am also very plump, not

good for my poor old back and my tiny feet (I take a size 2 kids and 4 ladies

and they don't even make them that small anymore). I have finally found a

person who makes shoes so I have a winter pair and a summer pair but mostly

where

Masseurs? You didn't tell me where you live or did you. I don't know how to

go back to your e-mail without losing mine. Tell me where it is near. I don't

know too much about your country. Do you know where Adelaide is? I is in

the middle, bottom of Australia. Probably the smallest city and a very pleasant

place to live. The houses are the cheapest here than the rest of the cities.

I was born here but moved to Perth in Western Australia and grew up there.

That is a lovely place too but I haven't lived there for 21 years as my

husband is in the Airforce so we have move around. Not much though in 21yr only

3

times!!!

Gentle hugs

Helen C

South Oz

[Guest guest]

i wonder if Adelaide or Hobart is the smallest capital city of a

state??? I have heard Darwin is quite large, and Canberra (Where I

now call home is pretty small too),

I like Adelaide and Mount Gambier too.

Sharon

Canberra

> Hi Cindy H, yes I am very happy to be 50. It was strange the way I

felt when

> I turned 50. I actually felt much wiser, more peaceful, joyful and

satisfied

> except for the delightful EDS LOL !!!!!!! I am only 4'91/2' " , I

was 4'93/4 "

> but have lost a 1/4 " . Could be even less now!!! I am also very

plump, not

> good for my poor old back and my tiny feet (I take a size 2 kids

and 4 ladies

> and they don't even make them that small anymore). I have finally

found a

> person who makes shoes so I have a winter pair and a summer pair

but mostly where

> Masseurs? You didn't tell me where you live or did you. I don't

know how to

> go back to your e-mail without losing mine. Tell me where it is

near. I don't

> know too much about your country. Do you know where Adelaide is?

I is in

> the middle, bottom of Australia. Probably the smallest city and a

very pleasant

> place to live. The houses are the cheapest here than the rest of

the cities.

> I was born here but moved to Perth in Western Australia and grew

up there.

> That is a lovely place too but I haven't lived there for 21 years

as my

> husband is in the Airforce so we have move around. Not much though

in 21yr only 3

> times!!!

> Gentle hugs

> Helen C

> South Oz

>

>

>

[Guest guest]

i wonder if Adelaide or Hobart is the smallest capital city of a

state??? I have heard Darwin is quite large, and Canberra (Where I

now call home is pretty small too),

I like Adelaide and Mount Gambier too.

Sharon

Canberra

> Hi Cindy H, yes I am very happy to be 50. It was strange the way I

felt when

> I turned 50. I actually felt much wiser, more peaceful, joyful and

satisfied

> except for the delightful EDS LOL !!!!!!! I am only 4'91/2' " , I

was 4'93/4 "

> but have lost a 1/4 " . Could be even less now!!! I am also very

plump, not

> good for my poor old back and my tiny feet (I take a size 2 kids

and 4 ladies

> and they don't even make them that small anymore). I have finally

found a

> person who makes shoes so I have a winter pair and a summer pair

but mostly where

> Masseurs? You didn't tell me where you live or did you. I don't

know how to

> go back to your e-mail without losing mine. Tell me where it is

near. I don't

> know too much about your country. Do you know where Adelaide is?

I is in

> the middle, bottom of Australia. Probably the smallest city and a

very pleasant

> place to live. The houses are the cheapest here than the rest of

the cities.

> I was born here but moved to Perth in Western Australia and grew

up there.

> That is a lovely place too but I haven't lived there for 21 years

as my

> husband is in the Airforce so we have move around. Not much though

in 21yr only 3

> times!!!

> Gentle hugs

> Helen C

> South Oz

>

>

>

[Guest guest]

HElen,

NO it isn't me who is coming with Rochie :-<. I have never met Rochie

or ANYONE with EDS (or even spoken to anyone except in this virtual

sense), there are NO support groups although my old GP and my Osteo

have both said that they have seen other patients with an EDS

diagnosis, so I also wonder where they are??? Maybe one day me or

someone else here will start a support group too.

I too have NO luck in getting medical professionals to help or even

really interested in learning abou it, the only exception is my

Osteopath who is wonderful.

Good Luck on starting up the support group

Sharon

Canberra

H-EDS

> Dear Sharon, every come over this way? Is it you who is coming

with Roachie

> in June? It would be great to see you. Guess what!! I have

finally made the

> first step to getting a support group together. I asked the

Arthritis

> Association if I could have meetings there and they said yes. I

also found out

> there was a support group near my home for people who had done a

course called,

> " Living Well with a Chronic Disease " . I have done the course.

Well the lady

> who runs it rang me today and we got talking. It turns out that I

am sure she

> has EDS and two of her children and hasn't known how to get

diagnosed or knows

> much about EDS so I was able to tell her a lot of things for which

she was so

> grateful. We are meeting for lunch in a few weeks. I was so

excited about

> this as I only know one person well with EDS and have spoken on the

phone with

> another who said she was ok for now and she had a friend who

diagnosed her as

> she had the same symptoms. It is going to be interesting to hear

from all the

> people with EDS. There is no professional here who will even look

up about

> it. I was told by the Genetic Counsellor that the Women's and

Children's

> Hospital diagnose around 30 - 40 every year so where are they and

how are they being

> help. I have been thinking about getting a group together for a

few years

> now but have had a lot of things going on but this lady I will be

meeting sounds

> perfect to help me I hope. Well must be off as it is almost 2am.

> Gentle Hugs,

> Helen C

> South Oz

>

>

>

>

>

[Guest guest]

HElen,

NO it isn't me who is coming with Rochie :-<. I have never met Rochie

or ANYONE with EDS (or even spoken to anyone except in this virtual

sense), there are NO support groups although my old GP and my Osteo

have both said that they have seen other patients with an EDS

diagnosis, so I also wonder where they are??? Maybe one day me or

someone else here will start a support group too.

I too have NO luck in getting medical professionals to help or even

really interested in learning abou it, the only exception is my

Osteopath who is wonderful.

Good Luck on starting up the support group

Sharon

Canberra

H-EDS

> Dear Sharon, every come over this way? Is it you who is coming

with Roachie

> in June? It would be great to see you. Guess what!! I have

finally made the

> first step to getting a support group together. I asked the

Arthritis

> Association if I could have meetings there and they said yes. I

also found out

> there was a support group near my home for people who had done a

course called,

> " Living Well with a Chronic Disease " . I have done the course.

Well the lady

> who runs it rang me today and we got talking. It turns out that I

am sure she

> has EDS and two of her children and hasn't known how to get

diagnosed or knows

> much about EDS so I was able to tell her a lot of things for which

she was so

> grateful. We are meeting for lunch in a few weeks. I was so

excited about

> this as I only know one person well with EDS and have spoken on the

phone with

> another who said she was ok for now and she had a friend who

diagnosed her as

> she had the same symptoms. It is going to be interesting to hear

from all the

> people with EDS. There is no professional here who will even look

up about

> it. I was told by the Genetic Counsellor that the Women's and

Children's

> Hospital diagnose around 30 - 40 every year so where are they and

how are they being

> help. I have been thinking about getting a group together for a

few years

> now but have had a lot of things going on but this lady I will be

meeting sounds

> perfect to help me I hope. Well must be off as it is almost 2am.

> Gentle Hugs,

> Helen C

> South Oz

>

>

>

>

>