NIH study

August 24, 2004

Thank you Lana! That also puts me at a little ease knowing how long

it took them to get to you. I emailed my application on Monday and

my sister who wants to come with me asked me to try for getting

booked in November if it's possible for them.

I bet you're excited to have your date Lana!

(((HUGS)))

-Rhea

> Hi everyone,

>

> I just wanted to let you all know that Dr. Nazli just called me to

> make sure she had everything she needed for when I go, which will

be

> Oct. 21-22nd. She told me they are SWAMPED with phone calls and

> emails! I said, " I bet you're about to lose it, aren't you? " , to

> which she replied, " Yes, I am! "

August 26, 2004

Hi all

I have been reading with interest all the posts regarding this study. I sure can

feel the excitement of those that maybe will finally get a diagnosis, or help

with their chronic pain, or suggestions on how to deal with things. I think it

is wonderful that these doctors are doing this. Maybe it will help other docrors

take note and listen to their patients and know that it is not all in their

heads. I also thought it would be interesting to participate in it to find out

more about VEDS if possible, however it is impossible for me to make it down

there. The problem is not financial, but time and my anxiety would never let me

travel anywhere by myself, but the biggest reason is that everyone else needs

this study way more than I do, I have no medical issues for myself. I don't live

in constant pain (except emotionally without my son) but physically I can do

basically what I want......I work, drive, shop go out for walks clean my house

whatever. I guess what I really am saying is that perhaps it is not necessary

for me to do this even though I have the VEDS diagnosis.....it is not affecting

me at the moment. I would rather have someone who really needs to go fill that

spot. SOmetimes I even wonder why I am on this list, but I sure have " met " some

great , caring , supportive people and when I do get into a funk I just turn on

the computer and help is there.

SO thank you guys, you are truly appreciated.

Betty

August 26, 2004

Betty, in reading this post,it dawned on me that the EDNF is looking

for information and pictures of people diagnosed will all types of

EDS, and type IV I believe is one that they don't have a lot of

picture of where the diagnosis isn't CLEARLY visible. Here's the

post:

Love Lana

Hi ALL,

You all have been a great help to this All Types EDS CD, I'm hoping

you can once again help us out.

We are looking for people to write a one to two page life story about

living with EDS, like when you were diagnosed, problems you had with

EDS, how it's changed your life etc.... Along with that.....send us a

picture or pictures of yourself that can be added to this CD. We need

case studies about all the different types of EDS. Please remember to

give us permission to print your information for this CD, if we use

yours.

In order to get this project done, hopefully in a month, we will need

these case studies as soon as possible.

Once again.....Thank you for all your help on this project!! I really

appreciate it........

Take care,

Lynn - Project Manager - EDS CD

Lynn@...

Pictures of ........

Classical Type -

Stretchy skin on any body part, wide scars & bruising etc....

Hypermobility-

joint hypermobility that affect large and small joints etc.....

Vascular Type-

skin that is thin and translucent with veins being seen through the

skin. There are certain facial characteristics present in some people

with the vascular type.

If you don't want your face shown on the CD, we can blur your face at

your request....Just let us know.

Please email pictures to Lynn@...

Send pictures to: Lynn

P.O. Box 66

Muskego, WI 53150

0r Email me your pictures: Lynn@...

Thank you again, for all your help.....Take care,

Lynn - Project Manager

Thanks for your help...........

Author: Barbara (24.207.183.---)

Date: 08-23-04 15:22

I do hope the pictures will not just include the major manifestations

as we want drs to know that we may have stretchy skin but not

enormously stretchy, be hypermobile but extraordinately so. I fear

the doctors only remember the pictures in their medical books of the

worst of the worst and thus do not think we have it if we are not as

bad. We need to also show that some of us with major problems do not

show them that visually.

barb from belleville

> Hi all

> I have been reading with interest all the posts regarding this

study. I sure can feel the excitement of those that maybe will

finally get a diagnosis, or help with their chronic pain, or

suggestions on how to deal with things. I think it is wonderful that

these doctors are doing this. Maybe it will help other docrors take

note and listen to their patients and know that it is not all in

their heads. I also thought it would be interesting to participate in

it to find out more about VEDS if possible, however it is impossible

for me to make it down there. The problem is not financial, but time

and my anxiety would never let me travel anywhere by myself, but the

biggest reason is that everyone else needs this study way more than I

do, I have no medical issues for myself. I don't live in constant

pain (except emotionally without my son) but physically I can do

basically what I want......I work, drive, shop go out for walks clean

my house whatever. I guess what I really am saying is that perhaps it

is not necessary for me to do this even though I have the VEDS

diagnosis.....it is not affecting me at the moment. I would rather

have someone who really needs to go fill that spot. SOmetimes I even

wonder why I am on this list, but I sure have " met " some great ,

caring , supportive people and when I do get into a funk I just turn

on the computer and help is there.

> SO thank you guys, you are truly appreciated.

> Betty

>

August 26, 2004