Group of Tennessee women with bleeding disorders

Empowering Women with Bleeding Disorders

Chapter reaches out to women
Author: Beth Marshall

In each issue of HemAware, we take a look at how local NHF chapters and associations are making a difference in their communities. This month we talk with Sandy Jones, president of the Tennessee Hemophilia and Bleeding Disorders Foundation.

Why did your chapter decide to create a program devoted specifically to women’s bleeding disorders? How did you get it started?

We were given a grant in 2003–2004 and decided to start our women’s program, which we named Women Empowering Women (WEW). We also did a women’s outreach weekend to inform and empower women all over the state. It was a very successful weekend, and the women seemed to really be interested in getting the word out about women’s bleeding disorders. That first year we went to the Southern Women’s Shows in Middle, East and West Tennessee to spread the word about women’s bleeding disorders. We had some success with that, but found it hard to get women to actually follow through and go to their local hemophilia treatment center (HTC) for testing.

In 2005–2006, we decided to do a door advertisement about women’s bleeding disorders (like you see in bathrooms). I feel that it definitely got the word out, but once again, we did not have people follow through and call the HTC.

This year, we decided to have a women’s weekend for strategic planning.

What have you found are the most effective ways of raising awareness of von Willebrand disease to an audience who might be unfamiliar with bleeding disorders in general?

I feel that we reached countless women through the door advertisements, but we were unable to capture the numbers because people just didn’t call in. I feel that women talking to other women has really helped to spread the word and empower other women. I look forward to seeing how this new strategic plan will help educate and empower women.

What are some of the successes that the program has enjoyed?

The weekend we had in November was very valuable because we got new women drawn in and excited about getting the word out. We also came up with a concrete strategic plan at our recent WEW retreat weekend, and many of the women have been following through with the plan and attending regular conference calls to keep everyone on task.

Would you like to expand the program? Do you have any events planned for 2008?

Yes, I want to expand and grow this program, and I am really focusing on achieving that as a goal. It is extremely important to get the word out for the health of women. Our WEW committee is working hard on a women’s track for our annual meeting. Last year, the annual meeting grew to about 250 attendees, and because of the different needs of people within the bleeding disorders community, we decided to do specialized tracks. We felt that we were undeserving the women so we are now making that a priority. We are also planning to attend nursing conferences and/or health fairs to help get the word out.

What advice would you give to other chapters that are considering starting a program centered on women’s bleeding disorders?

Get a good core group of women who are willing to work with you and let them come up with their own strategic plan. This allows them to take ownership of the program and the goals. I also highly recommend monthly conference calls to keep everyone motivated and on task.

The Tennessee Hemophilia and Bleeding Disorders Foundation is located in Smyrna. To contact the foundation, call 615.220.4868.

[Steps for Living: Bleeding Disorders in Women]