HI THERE

[Guest guest]

Welcome back, Onale!

-Barb

Barbara

HEDS

Seattle, WA

[Guest guest]

Welcome back, Onale!

-Barb

Barbara

HEDS

Seattle, WA

[Guest guest]

Welcome Back Onale!

Jeff

[Guest guest]

Welcome Back Onale!

Jeff

[Guest guest]

Welcome Back Onale!

Jeff

[Guest guest]

Hi Onale --

My name is Patti and I am new here (joined a few months ago). I have EDS IV and

I feel that the people here are the greatest and most supportive I have had the

pleasure of knowing.

By the way, where is Inuvik? Where are you now?

Welcome back,

Patti

Hi there

I haven't had the chance yet to check out the bio page and see if I still know

anyone in the CEDA family but...hello to all. It's been a long time since I was

part of the group and I missed it so much. I look forward to meeting new members

and visiting with old friends.

I was glad to see that the postcard program is still a go. I have all of my

postcards from when I lived in Inuvik.

[Guest guest]

Hi Onale --

My name is Patti and I am new here (joined a few months ago). I have EDS IV and

I feel that the people here are the greatest and most supportive I have had the

pleasure of knowing.

By the way, where is Inuvik? Where are you now?

Welcome back,

Patti

Hi there

I haven't had the chance yet to check out the bio page and see if I still know

anyone in the CEDA family but...hello to all. It's been a long time since I was

part of the group and I missed it so much. I look forward to meeting new members

and visiting with old friends.

I was glad to see that the postcard program is still a go. I have all of my

postcards from when I lived in Inuvik.

[Guest guest]

Hi Onale --

My name is Patti and I am new here (joined a few months ago). I have EDS IV and

I feel that the people here are the greatest and most supportive I have had the

pleasure of knowing.

By the way, where is Inuvik? Where are you now?

Welcome back,

Patti

Hi there

I haven't had the chance yet to check out the bio page and see if I still know

anyone in the CEDA family but...hello to all. It's been a long time since I was

part of the group and I missed it so much. I look forward to meeting new members

and visiting with old friends.

I was glad to see that the postcard program is still a go. I have all of my

postcards from when I lived in Inuvik.

[Guest guest]

Welcome back Onale!

Hugs,

Sue

[Guest guest]

Hi Onale, and Robin,

I'm , and haven't been diagnosed yet. Me and 2 of my daughters are seeing

a geneticist next month.

We are looking at the hypermobile type, and possible vascular, but we have the

stretchy/soft skin too.

My son is also showing symptoms that could be EDS related.

I'm the one that asks too many questions.

[Guest guest]

Hi Onale, and Robin,

I'm , and haven't been diagnosed yet. Me and 2 of my daughters are seeing

a geneticist next month.

We are looking at the hypermobile type, and possible vascular, but we have the

stretchy/soft skin too.

My son is also showing symptoms that could be EDS related.

I'm the one that asks too many questions.

[Guest guest]

,

There is NO SUCH THING AS TOO MANY QUESTIONS.

I also do NOT have an official diagnosis even after seeing 2

geneticists (one of which is supposed to be the top specialist in the

country), my GP says H-EDS (hypermobile kind) and the best I could

get out of the geneticists was " a genetic hereditary connective

tissue collagen hypermobility disorder " (like DUH! if it is Genetic

then isn't it hereditary) they said NOT EDS as my skin wasn't

stretchy enough or Odd enough (while it was supposedly a little Odd

it wasn't ODD enough) I now know that the skin involvement is only 1

of the diagnostic criteria and it changes in severity between people,

some have bad skin involvement and some have very little. on a weird

note, I have a LOT of joint issues and Pain issue but my brother and

sister who are both suspected of having EDS have more skin

involvement than me and less join issues (my sister has very very bad

teeth issues (she has NONE at 30 yrs old) and my Mum had the same

issue at about the same age (or before)).

EDS is the ONLY thing that adds up to explain all of my and my

families symptoms (including the teeth issues if you look at

Periodontal EDS).

Sharon

Australia

> Hi Onale, and Robin,

> I'm , and haven't been diagnosed yet. Me and 2 of my

daughters are seeing a geneticist next month.

> We are looking at the hypermobile type, and possible vascular, but

we have the stretchy/soft skin too.

> My son is also showing symptoms that could be EDS related.

> I'm the one that asks too many questions.

>

>

[Guest guest]

,

There is NO SUCH THING AS TOO MANY QUESTIONS.

I also do NOT have an official diagnosis even after seeing 2

geneticists (one of which is supposed to be the top specialist in the

country), my GP says H-EDS (hypermobile kind) and the best I could

get out of the geneticists was " a genetic hereditary connective

tissue collagen hypermobility disorder " (like DUH! if it is Genetic

then isn't it hereditary) they said NOT EDS as my skin wasn't

stretchy enough or Odd enough (while it was supposedly a little Odd

it wasn't ODD enough) I now know that the skin involvement is only 1

of the diagnostic criteria and it changes in severity between people,

some have bad skin involvement and some have very little. on a weird

note, I have a LOT of joint issues and Pain issue but my brother and

sister who are both suspected of having EDS have more skin

involvement than me and less join issues (my sister has very very bad

teeth issues (she has NONE at 30 yrs old) and my Mum had the same

issue at about the same age (or before)).

EDS is the ONLY thing that adds up to explain all of my and my

families symptoms (including the teeth issues if you look at

Periodontal EDS).

Sharon

Australia

> Hi Onale, and Robin,

> I'm , and haven't been diagnosed yet. Me and 2 of my

daughters are seeing a geneticist next month.

> We are looking at the hypermobile type, and possible vascular, but

we have the stretchy/soft skin too.

> My son is also showing symptoms that could be EDS related.

> I'm the one that asks too many questions.

>

>

[Guest guest]

,

There is NO SUCH THING AS TOO MANY QUESTIONS.

I also do NOT have an official diagnosis even after seeing 2

geneticists (one of which is supposed to be the top specialist in the

country), my GP says H-EDS (hypermobile kind) and the best I could

get out of the geneticists was " a genetic hereditary connective

tissue collagen hypermobility disorder " (like DUH! if it is Genetic

then isn't it hereditary) they said NOT EDS as my skin wasn't

stretchy enough or Odd enough (while it was supposedly a little Odd

it wasn't ODD enough) I now know that the skin involvement is only 1

of the diagnostic criteria and it changes in severity between people,

some have bad skin involvement and some have very little. on a weird

note, I have a LOT of joint issues and Pain issue but my brother and

sister who are both suspected of having EDS have more skin

involvement than me and less join issues (my sister has very very bad

teeth issues (she has NONE at 30 yrs old) and my Mum had the same

issue at about the same age (or before)).

EDS is the ONLY thing that adds up to explain all of my and my

families symptoms (including the teeth issues if you look at

Periodontal EDS).

Sharon

Australia

> Hi Onale, and Robin,

> I'm , and haven't been diagnosed yet. Me and 2 of my

daughters are seeing a geneticist next month.

> We are looking at the hypermobile type, and possible vascular, but

we have the stretchy/soft skin too.

> My son is also showing symptoms that could be EDS related.

> I'm the one that asks too many questions.

>

>

[Guest guest]

Well, I had a rheumatologist say I don't have EDS because I don't have fragile

skin. That upset me, cause I felt like I was back at the beginning, like I had

to look for some other reason for all our problems. But, everyone on the board

said that you don't have to have the skin issues, so I'm still trying to find

out if EDS is the answer.

I do have stretchy skin - not fragile - but probably not too bad, cause I didn't

notice it till I looked at a picture on the web of someone with EDS stretching

their neck skin. Mine and 's did the same thing as the picture. But, I

didn't know I was hypermobile until about 7 different doctors told me I am. I

didn't know that everyone can't do the things I do with my body.

With all my chronic joint/muscle pain, subluxing joints,hypermobility, raynauds,

cracking teeth, prolapsed uteris, tmj, being cold all the time, not getting numb

at the dentist;

's 3 collapsed lung, epidural not working, joint pain, raynauds,

recurring UTI's, chronic migraines, stretch marks, Not getting numb at the

dentist, and her very large bladder (which the urologist said could be from a

connective tissue problem - we hadn't told her anything about our EDS

suspisions);

s chronic joint/muscle pain, hypermobility, stretchy skin, weird little

skin rashes, raynauds, stretch marks, eye pain, IBS, subluxing joints, slight

curvature of her spine;

's Knee pain, hypermobility, migraines, GERD, costrochondritis;

(I most likely forgot some things - and I didn't put everything, cause I don't

want to bore you)

Well, it's just too much to be a coincidence to not be EDS.

My brother and sister also have a few symptoms (my sister's teeth are really

bad, like your sisters).

But, my parents swear they don't have any symptoms. I think my mom is

hypermobile, but she won't admit it.

Oh well.

My dad is just upset cause know he thinks even his genes aren't good.

I'm sort of nervous to see Dr Byers. I'm afraid he's gonna say we don't have it

(not that I want it), but then where will we be? Right back at the beginning,

with all these health problems and no answer for any of them!!!!!

[Guest guest]

Well, I had a rheumatologist say I don't have EDS because I don't have fragile

skin. That upset me, cause I felt like I was back at the beginning, like I had

to look for some other reason for all our problems. But, everyone on the board

said that you don't have to have the skin issues, so I'm still trying to find

out if EDS is the answer.

I do have stretchy skin - not fragile - but probably not too bad, cause I didn't

notice it till I looked at a picture on the web of someone with EDS stretching

their neck skin. Mine and 's did the same thing as the picture. But, I

didn't know I was hypermobile until about 7 different doctors told me I am. I

didn't know that everyone can't do the things I do with my body.

With all my chronic joint/muscle pain, subluxing joints,hypermobility, raynauds,

cracking teeth, prolapsed uteris, tmj, being cold all the time, not getting numb

at the dentist;

's 3 collapsed lung, epidural not working, joint pain, raynauds,

recurring UTI's, chronic migraines, stretch marks, Not getting numb at the

dentist, and her very large bladder (which the urologist said could be from a

connective tissue problem - we hadn't told her anything about our EDS

suspisions);

s chronic joint/muscle pain, hypermobility, stretchy skin, weird little

skin rashes, raynauds, stretch marks, eye pain, IBS, subluxing joints, slight

curvature of her spine;

's Knee pain, hypermobility, migraines, GERD, costrochondritis;

(I most likely forgot some things - and I didn't put everything, cause I don't

want to bore you)

Well, it's just too much to be a coincidence to not be EDS.

My brother and sister also have a few symptoms (my sister's teeth are really

bad, like your sisters).

But, my parents swear they don't have any symptoms. I think my mom is

hypermobile, but she won't admit it.

Oh well.

My dad is just upset cause know he thinks even his genes aren't good.

I'm sort of nervous to see Dr Byers. I'm afraid he's gonna say we don't have it

(not that I want it), but then where will we be? Right back at the beginning,

with all these health problems and no answer for any of them!!!!!

[Guest guest]

Well, I had a rheumatologist say I don't have EDS because I don't have fragile

skin. That upset me, cause I felt like I was back at the beginning, like I had

to look for some other reason for all our problems. But, everyone on the board

said that you don't have to have the skin issues, so I'm still trying to find

out if EDS is the answer.

I do have stretchy skin - not fragile - but probably not too bad, cause I didn't

notice it till I looked at a picture on the web of someone with EDS stretching

their neck skin. Mine and 's did the same thing as the picture. But, I

didn't know I was hypermobile until about 7 different doctors told me I am. I

didn't know that everyone can't do the things I do with my body.

With all my chronic joint/muscle pain, subluxing joints,hypermobility, raynauds,

cracking teeth, prolapsed uteris, tmj, being cold all the time, not getting numb

at the dentist;

's 3 collapsed lung, epidural not working, joint pain, raynauds,

recurring UTI's, chronic migraines, stretch marks, Not getting numb at the

dentist, and her very large bladder (which the urologist said could be from a

connective tissue problem - we hadn't told her anything about our EDS

suspisions);

s chronic joint/muscle pain, hypermobility, stretchy skin, weird little

skin rashes, raynauds, stretch marks, eye pain, IBS, subluxing joints, slight

curvature of her spine;

's Knee pain, hypermobility, migraines, GERD, costrochondritis;

(I most likely forgot some things - and I didn't put everything, cause I don't

want to bore you)

Well, it's just too much to be a coincidence to not be EDS.

My brother and sister also have a few symptoms (my sister's teeth are really

bad, like your sisters).

But, my parents swear they don't have any symptoms. I think my mom is

hypermobile, but she won't admit it.

Oh well.

My dad is just upset cause know he thinks even his genes aren't good.

I'm sort of nervous to see Dr Byers. I'm afraid he's gonna say we don't have it

(not that I want it), but then where will we be? Right back at the beginning,

with all these health problems and no answer for any of them!!!!!

[Guest guest]

> Well, I had a rheumatologist say I don't have EDS because I don't have

fragile skin.

When are these rheumatologists going to learn that you don't have to have

EVERY symptom of EDS to still have EDS? ARGH!!! EDS symtoms are variable

and not everyone will express all symptoms or to the same degree.

> I didn't know that everyone can't do the things I do with my body.

Therein lies part of the problem with EDS within families. How do you know

to ask the doctor about it if everyone in the family does the same thing?

It also makes it harder for some relatives with minor symptoms to comprehend

the level of disability EDS poses for more severely affected family members

because they cannot connect the level of disability to their own experience

with hypermobility. There is a tendency to say, " yeah, well, I am

hypermobile too, and I never had any problems, why are you complaining? "

They don't grasp the concept of variable severity.

-Barb

[Guest guest]

> Well, I had a rheumatologist say I don't have EDS because I don't have

fragile skin.

When are these rheumatologists going to learn that you don't have to have

EVERY symptom of EDS to still have EDS? ARGH!!! EDS symtoms are variable

and not everyone will express all symptoms or to the same degree.

> I didn't know that everyone can't do the things I do with my body.

Therein lies part of the problem with EDS within families. How do you know

to ask the doctor about it if everyone in the family does the same thing?

It also makes it harder for some relatives with minor symptoms to comprehend

the level of disability EDS poses for more severely affected family members

because they cannot connect the level of disability to their own experience

with hypermobility. There is a tendency to say, " yeah, well, I am

hypermobile too, and I never had any problems, why are you complaining? "

They don't grasp the concept of variable severity.

-Barb

[Guest guest]

> Well, I had a rheumatologist say I don't have EDS because I don't have

fragile skin.

When are these rheumatologists going to learn that you don't have to have

EVERY symptom of EDS to still have EDS? ARGH!!! EDS symtoms are variable

and not everyone will express all symptoms or to the same degree.

> I didn't know that everyone can't do the things I do with my body.

Therein lies part of the problem with EDS within families. How do you know

to ask the doctor about it if everyone in the family does the same thing?

It also makes it harder for some relatives with minor symptoms to comprehend

the level of disability EDS poses for more severely affected family members

because they cannot connect the level of disability to their own experience

with hypermobility. There is a tendency to say, " yeah, well, I am

hypermobile too, and I never had any problems, why are you complaining? "

They don't grasp the concept of variable severity.

-Barb

[Guest guest]

> It would be nice if the medical community would do their homework and come

to an accurate consensus of what's what.

Those who research EDS are working towards that end, but they are in the

research realm. We deal with the regular doctors who barely keep up with

the latest research on common diseases and conditions, so they are not

likely to stay current on what is considered " rare " .

[Guest guest]

> It would be nice if the medical community would do their homework and come

to an accurate consensus of what's what.

Those who research EDS are working towards that end, but they are in the

research realm. We deal with the regular doctors who barely keep up with

the latest research on common diseases and conditions, so they are not

likely to stay current on what is considered " rare " .

[Guest guest]

In a message dated 1/19/04 8:23:14 PM Eastern Standard Time,

monica-jb@... writes:

<< But, everyone on the board said that you don't have to have the skin

issues, so I'm still trying to find out if EDS is the answer. >>

,

In an earlier post you verbalized having transparent skin......that is part

of EDS.......stretchiness and fragility is variable. if soemone asked me years

ago if I had fragile skin, I owuld have said no. My skin is not sensitive

and it has healed from surgeries. One scar is unsightly, but all others are

fine. So go figure. I tested positive for VEDS. You may not, but in all types

there is considerable variability. Take care.

Hugs,

Sue G.

[Guest guest]

In a message dated 1/19/04 8:23:14 PM Eastern Standard Time,

monica-jb@... writes:

<< But, everyone on the board said that you don't have to have the skin

issues, so I'm still trying to find out if EDS is the answer. >>

,

In an earlier post you verbalized having transparent skin......that is part

of EDS.......stretchiness and fragility is variable. if soemone asked me years

ago if I had fragile skin, I owuld have said no. My skin is not sensitive

and it has healed from surgeries. One scar is unsightly, but all others are

fine. So go figure. I tested positive for VEDS. You may not, but in all types

there is considerable variability. Take care.

Hugs,

Sue G.

[Guest guest]

I don't have any skin issues either besides my scars changing shape from day to

day. I keep hoping that I doctor will tell me I don't have EDS but it never

happens! Nobody else in my family have any symptoms... My grandmother had

rheumatoid arthritis and my great grandmother on the other side of the family

had bad arthritis (But everything was called arthritis back then) Apparently she

used to fall down all the time too. (and she didn't drink)

For me, every joint in my body is affected and some are completely detached. I

have a " rubber " toe, thumb and a foot that is totally detached. The doctor said

it was " like someone stuck this foot on here and forgot to hook it up! " I have

lower lombardosis, IBS, migraine headaches, troubles with dental freezing, and

now my eyes are really bothering me... and I used to have extreme muscle spasms

but they seemed to have stopped.

Ona