EDS Awareness Campaign

By Barbara J. Uggen-Davis

For the first time in history, the EDS community came together on a global scale to promote EDS awareness and to create EDS Awareness Month, to be held every February. EDS Today led a group of volunteers and other worldwide EDS organizations in this effort. While there were too many activities and volunteers to mention here, we would like to share with you some highlights.

THE IDEA

I’ve been a member of the EDS online community since the very first EDS email support group was created. The idea of an EDS awareness month or an awareness campaign has been kicked around many times over the past seven years, but a collaborative effort never really took off.

In 2001, Joyce Norris from Canada, suggested that there be an awareness symbol and offered to make silver ribbon necklaces for EDS Awareness. That sparked a conversation among the members of the Canadian Ehlers-Danlos Association email support group (a worldwide email list) about EDS awareness.

Through the course of discussion, EDS Today assumed a leadership role in making the idea into a full-scale awareness campaign. A separate email list was created for the purpose of planning activities and events for the campaign. An online poll was established for people to vote on the awareness month and pin ideas. Barbara J. Uggen-Davis posted a website for the campaign on her own account until her Internet Service Provider filed chapter 11, after which EDS Today moved the website under its own account.

THE MONTH

February was chosen for EDS Awareness Month by an online vote. The primary reason February was favored was that few other organizations had already claimed it. In addition, February was also the time frame for the New Zealand Ehlers-Danlos Foundation’s conference.

THE ACTIVITIES

Doctor Education

The primary goal of the 2002 EDS Awareness Campaign was to educate doctors about EDS. Unfortunately, because EDS is considered rare, medical schools often don’t provide adequate education in recognizing and treating EDS. Doctors frequently are unfamiliar with EDS, making it difficult for patients to get a diagnosis and proper treatment. The EDS Awareness Campaign sought to help solve this problem by sending information about EDS to doctors around the world. This was done through the use of a targeted mailing to approximately 1500 doctors worldwide.

Each information kit mailed to doctors included the following:

1. A cover letter announcing EDS Awareness Month and giving some brief facts about EDS,

2. A worldwide resource list of Ehlers-Danlos organizations,

3. Three brochures about EDS, and

4. An order form for additional educational materials.

Media Exposure

Through the efforts of several volunteers, EDS was covered in local and national media. A press release was posted on the EDS Awareness Website and distributed to media outlets worldwide, often accompanied by personal stories of campaign volunteers with EDS. Links to the press release and all online articles are posted on the EDS Awareness Campaign website at:

http://www.edstoday.org/Awareness/

Judy Sobel, did an interview with Ivanhoe Broadcast News, the nation’s largest television news gathering organization covering medical breakthroughs, family health and consumer news for women. The article “Living with EDS – Patient’s Q&A” is online at Ivanhoe’s website where it may be picked up by other news agencies and republished.

Following Judy’s interview, Ivanhoe Broadcast News contacted EDS Today for an interview with experts on EDS. That led to a joint interview with Jill Douglas-Hand, R.N., founder of the Canadian Ehlers-Danlos Association and Linda Neumann-Potash, RN, executive director of Ehlers-Danlos National Foundation. That interview, entitled “Ehlers-Danlos Syndrome – Experts Q&A” is also on Ivanhoe’s website.

Darlene Clarke, was interviewed by Alicia Booth of News Channel 5 in Cleveland Ohio. The story entitled “Rare Disorder Causes Limbs to Fall Apart” appears online as a video and text transcript. Both may be viewed on the websites of News Net 5 and KRCA Channel 13.

The Toronto Star published a story on February 19 about David Freudmann’s efforts to raise funds to sponsor an endowment for EDS research at Sick Kids Hospital in Toronto Canada. The Article “Stealthy Syndrome is Sometimes Fatal” is no longer available online.

Kim Bishop did interviews for the newspaper in Cartersville, Georgia and for her local radio station. The Poughkeepsie Journal in New York ran an article on EDS, during the week of February 27, but the article is no longer in their online archive.

Events and Fundraisers

The Ehlers-Danlos Foundation of New Zealand held its annual conference on February 23-24, 2002. At the event, information was distributed to promote EDS Awareness.

The Western New York EDNF Branch held a Mardi Gras fundraiser on February 9 which was sponsored by the AMVETS and AMVETS Ladies Auxiliary.

Joyce Norris has been taking orders for sterling silver EDS Awareness necklaces. A portion of the proceeds from the necklaces will be used for the expenses from the Awareness Campaign. Rabecca Primeau is selling the official EDS Awareness pins. Both the necklace and the pin may be ordered through EDS Today using the order form at the back of the newsletter.

Rabecca Primeau has set up a Scratch Card fundraiser. Visit www.scratchcard.com or call 800-561-8388 and ask for Jenny at extension 243 or Nick at extension 315 for more information. The EDS Awareness Scratch Card Account number is 147948.

THE SPONSORS

All of the following organizations participated in the campaign. They are listed alphabetically.

Canadian Ehlers-Danlos Association (CEDA).  Volunteers from CEDA mailed out information kits to doctors within Canada.

CEDA also produced an Educational CD-ROM on Ehlers-Danlos Syndrome. This incredible CD-ROM was included on the order form in the doctor education kits. EDS Today is distributing the CD-ROM in the USA. It may be ordered using the order form at the back of this newsletter.

EDS Today. EDS Today led the Awareness Campaign, created the email planning team list, coordinated the mailing list database, sponsored the mailing costs, and maintained the website.

Ehlers-Danlos Foundation of New Zealand. Volunteers from the Ehlers-Danlos Foundation of New Zealand mailed out kits to doctors within New Zealand and shared information about the awareness campaign during their annual conference in February.

Ehlers-Danlos National Foundation.  EDNF provided 2700 copies of their informational brochures and granted reprint permission for an additional 1800 to be reproduced by the campaign.

Hypermobility and Fibromyalgia List.  Volunteers from the mailing list collected names and addresses of doctors for the mailing list.

THE COSTS

EDS Today spent $945 for the Awareness Campaign. To date, $380 in donations were received, leaving a balance of $565. If you are interested in helping, please send donations to EDS Today, Attention Awareness Campaign using the form at the back of the newsletter.

THE RESULTS

Approximately 1500 doctors worldwide have received information about Ehlers-Danlos Syndrome. The information kits also included a phone number for doctors to call to request speakers about EDS. Within days of the mailing, the first request for a speaker came in. Barbara J. Uggen-Davis of EDS Today will be giving a 1-hour presentation on EDS to a group of Podiatrists on May 22, in Seattle, Washington.

It is impossible to guess how many people have learned about EDS as a result of the media exposure. Even if one person with EDS is diagnosed as a result of the education and media exposure from the 2002 EDS Awareness Campaign, then the campaign was a success.

THE FUTURE

Plans are already in progress for the 2003 EDS Awareness Campaign. In addition to expanding the mailing for doctor education, the 2003 Campaign will also focus on educating teachers on how to deal with students who have EDS. Laura Hague is working on an illustrated guide for teachers. Volunteers are needed to help with this and other projects for the campaign. Please visit the campaign website at http://www.edstoday.org/Awareness/ or call EDS Today at (317) 731-5337 Cell for more information on how you can make the 2003 EDS Awareness Campaign an even greater success than 2002.

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