EDS is a little known genetic syndrome. The Ehlers-Danlos National Foundation is spreading information through their educational campaigns.
Ehlers-Danlos Syndrome (EDS) is a group of genetic disorders that affects connective tissue. There are six different types depending upon how the skin, joint and organs are affected. Though EDS is believed to affect 1 in 5,000 to 1 in 10,000 people, it is frequently not diagnosed until adulthood or not diagnosed at all. The Ehlers-Danlos National Foundation’s mission is to educate health care professionals and families with EDS so that diagnosis is easier to make and treatments are easier to plan.
EDNF
The Ehlers-Danlos National Foundation (EDNF) was established in 1985 by Nancy Hanna Rogowski (1957-1995) as she searched for emotional support after being diagnosed with EDS. Her efforts blossomed into an international information center dedicated to creating resources for anyone who has EDS or supports patients or loved ones with it. A non-profit organization, EDNF now has over 2,000 members and over 40 volunteer run groups throughout the US.
EDNF provides an active community resource for those affected by EDS. Message boards and chat rooms are available to members looking for advice and emotional support for themselves or loved ones. Local groups give an opportunity to form face-to-face relationships with others, and an avenue to assist with spreading information.
Communication
A primary focus of EDNF is accurate information. Their Professional Advisory Network is in place to ensure that all medical information on the website is correct.
EDNF maintains several avenues for communication. Their quarterly newsletter, Loose Connections, contains articles of current research and uplifting personal stories. The website provides areas for personal and family support as well as medical professionals. Patient wallet cards, informational brochures for medical professionals, and a CD-ROM educational program are also available. Furthermore, they will hold their 17th annual learning conference this summer in Houston, TX.
Medical Experts
Besides the website and publications, EDNF is heavily involved in promoting research and medical understanding of EDS. Since EDS is a syndrome it presents differently from patient to patient. This makes diagnosis through symptoms and clinical observations difficult; especially considering it is a rare disorder.
EDNF has sponsored both national and international conferences since 1988 to bring medical experts, patients and families together. For example, in 1997 they co-sponsored a conference in France that resulted in simplifying the diagnosis of EDS. In 1999 it was a meeting at Banbury Center at Cold Spring Harbor Laboratory to improve the definition of EDS. In the past two years EDNF has also contributed over $140,000 to research projects into the diagnosis, treatment and possible cure of EDS.
Membership
For more information about EDS or EDNF, or to join their efforts, visit their website at www.ednf.org .
