By Barbara Davis (Barb) on Sunday, January 20, 2002 - 12:16 pm:

February 2002 is the first annual EDS Awareness Campaign. For more information, please visit the campaign website at http://www.edstoday.org/Awareness/.

Everyone is welcome to join the planning group and assist with the campaign.

-Barb

By Barbara Davis (Barb) on Sunday, January 20, 2002 - 12:17 pm:

Several months ago, Jill posted the following letter to the CEDA
list and asked people to send letters to websites and other groups
to encourage them to add information about EDS. As part of the
awareness campaign, I ask that everyone please visit as many medical
websites as possible and ask them to add links to EDS information.
I am posting Jill's letter below and updating the links section to
include more EDS sites.

This is something we can all do at home without any cost, but it can
make a huge difference for someone looking for information on EDS.

-Barb


To whom it may concern,

I am writing to request a link to vial information regarding a
disorder that may be common to some population of people you
encounter. This is a rare connective tissue disorder known as
Ehlers Danlos Syndrome.

What is EDS?


Ehlers-Danlos syndrome (EDS) is a group of hereditary disorders that
affects mainly the skin and joints, but other organs as well. Ehlers
and Danlos were two physicians who described a type of EDS in the
1900s. Thus, the syndrome was named after them. Since their original
descriptions, additional types have been described. The "classic"
type identified by Ehlers and Danlos is now called EDS I. EDS is a
relatively rare disorder; occurring in fewer than 1 in 20,000
people. It occurs in both children and adults.

It is believed that people with EDS have a defect in their
connective tissue. Connective tissue provides support to many parts
of the body such as the skin, muscles, tendons and ligaments. The
cause of fragile skin and unstable joints in some types of EDS is
faulty collagen, the protein "glue" that makes connective tissue
strong and elastic.

What are the symptoms of EDS?

· Skin: soft velvet-like skin; variable skin hyperextensibility;
fragile skin that tears or bruises easily (bruising may be severe);
severe scarring; slow and poor wound healing; development of
molluscoid pseudotumors (fleshy lesions associated with scars over
pressure areas).

· Joints: joint hypermobility; loose/unstable joints which are prone
to frequent dislocations and/or subluxations; joint pain;
hyperextensible joints (they move beyond the joint's normal range);
early onset of osteoarthritis.

· Body System: chronic, early onset, debilitating musculoskeletal
pain (usually associated with the Hypermobility Type);
arterial/intestinal/uterine fragility or rupture (usually associated
with the Vascular Type); Scoliosis at birth and scleral fragility
(associated with the Kyphoscoliosis Type); poor muscle tone
(associated with the Arthrochalasia Type); mitral valve prolapse;
and gum disease.

There is a great deal of support for people who live with this
disorder and it is with this in mind that I write you. Please
consider placing a link to your site to one or more of these
organizations to help support your local support organization and
others worldwide:



In Canada:
The Canadian Ehlers Danlos Association
http://www.ceda.ca

In the U.S.:
The Ehlers Danlos National Foundation
http://www.ednf.org

EDS Today
http://www.edstoday.org/

EDS Support Group Bulletin Board
http://members3.boardhost.com/edstoday/

Hypermobility and Fibromyalgia
http://anaiis.tripod.com/hmedfm/index.html

Hypermobile Joints Forum
http://marge.com/hypermobility/

In the UK:
The EDS-UK SUpport Group
http://www.ehlers-danlos.org

In Australia:
The Ehlers Danlos Syndrome Support Group of Australia
http://www.edsv.homestead.com

In New Zealand:
The Ehlers Danlos Foundation of New Zealand
http://www.edfnz.org.nz

In Norway:
The Norwegian Support Group
http://www.eds-foreningen.no

In Sweden:
The Swedish EDS Support Group
http://hem.passagen.se/edsr

In France:
The France EDS Association
http://perso.wanadoo.fr/ehlers.danlos

I thank you in advance for your support, interest and help to assist
others connect to support and information about this rare connective
tissue disorder.

Kindest regards,