Re: EDNF Project Information LANA from Deb

[Guest guest]

What I would suggest would be to go to the ednf website and go to

the ALL Types CD project. You can read a lot there, or you can

contact Lynn and ask her.

Thanks Deb! I'm sorry I didn't think of this before now!

Love Lana

> 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@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

>

>

>

>

>

>

>

>

>

[Guest guest]

And the new phone system should have been up and running today, as I

was there when they started installing the system yesterday

afternoon! They were just waiting to confirm that the new phone

numbers would stay the same once the lines were installed, and that

was confirmed yesterday.

If it is bad news that you are too late to participate, that means

the good news is that all members of EDNF will soon receive their

copy of the CD-ROM!!

> In a message dated 8/26/2004 9:47:28 PM Pacific Standard Time,

> EDSLana@c... writes:

> What I would suggest would be to go to the ednf website and go to

> the ALL Types CD project. You can read a lot there, or you can

> contact Lynn and ask her.

> Anyone still wishing to do this might get this to her

ASAP.....latest word is

> that as soon as the new phone system is ready at the EDNF and she

has the

> phone # to list on the CD, they'll be wrapping this up and getting

it sent out!

> Liza

>

>

>