EDNF Project Information LANA from Deb

[Guest guest]

Lana~~

I am not sure that they would want what I have.

It is so darn long if I give my total EDS medical history.

Starts from age of 2 with miss-accused Dx of child abuse due to my excessive

bruising following with all 24 surgeries (names of reconstructive surgeries

and dates all that)

Is this what they want or .

Well I guess I am wondering if the clinical is wanted or more the antidotal.

Please let me know as I would like to participate too.

Debbi

AKA: jetskideb

SoCal EDS'er

Lana-EDNF Project Information

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@...

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