Re: Lana-EDNF Project Information

[Guest guest]

GREAT, thanks TJ!!

Love Lana

> Hi Lana-

>

> I sent along my information to them- and wanted to thank you for

posting. Shall see where it goes from here- if it can be of any

help to someone- then I am more than glad to share the information!

>

> Hope you are as well as can be- Hugs N Love- TJ

>

>

>

> 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@e...

>

> 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@e...

> Send pictures to: Lynn

> P.O. Box 66

> Muskego, WI 53150

>

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

>

> 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

>

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