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How You Can Help Raise Awareness of VulvodyniaA recent Harvard study showed that as many as 6 million American women suffer from vulvodynia. Almost 60 percent of patients report visiting 3 or more health care providers to obtain a diagnosis and an astounding 40 percent remain undiagnosed. This study also reported that 40% of women with painful symptoms did not even seek medical care. Some women incorrectly assume that some level of discomfort or pain with intercourse is normal, while others may be hesitant to discuss painful symptoms with their health care providers for many reasons. It is up to all of us to do our part to educate health care providers about vulvodynia, and to help women both learn about the condition and feel more at ease talking about it. You may feel that you are only one person and cannot make much of a difference in your community but that is not true! Here are some ways YOU can help to raise awareness of vulvodynia: Send a Letter to Health Care Providers Who Misdiagnosed You One of the most simple, yet effective things YOU can do is send a letter to all of the health care providers (HCP) who were unable to help your search for a diagnosis. Because of the personal connection, a letter from a former patient is more likely to be read by the HCP than simply requesting that the NVA mail an unsolicited info packet to their office. Click here to download a sample letter that you can personalize. Click here to download information to enclose in your letter to your healthcare provider. Disseminate Educational Information to Local PhysiciansYou can also educate health care providers in your local area by mailing or hand-delivering educational materials on vulvodynia to their offices. Here’s how to do it:
Contact Your Local MediaLocal reporters and television anchors are most interested in covering a newsworthy story surrounding a specific event, e.g., release of research study, local event (such as mentioned above). However, some may be willing to write an overview piece on the condition, profiling a local woman who suffers from vulvodynia. In order to generate this kind of publicity, follow these steps:
Send Publicity Ideas or Media Contacts to NVADo you have experience in the public relations field? Do you know a writer, film producer or celebrity? Have you seen a TV program we should appear on? Do you have a creative idea for grabbing headlines? If so, we’d love to hear from you! Please submit your idea to Chris Veasley. Willing to Be Interviewed? Want to Tell Your Story?NVA is frequently contacted by media professionals who are interested in covering vulvodynia. Often times, they ask NVA to put them in contact with women who are suffering from the condition who are willing to tell their story. If you are willing to be interviewed, please email Chris Veasley and include a brief summary of your history with vulvodynia and how it has impacted your life. Organize a Public Education ForumIn an effort to raise awareness of the condition and reach women who may be suffering in silence, groups throughout the country have organized educational forums that are open to the public. In order to help you start thinking about what you might like to do in your area, the next paragraph describes what the Wisconsin support group organized with great success. The group contacted state representative, Sheldon Wasserman, MD, who is also a practicing gynecologist, and asked him to give a key-note address at a 2-hour forum open to the public. They chose a location that was well-known and easily accessible (local hospital auditorium) and advertised the event through flyers at the offices of local health care providers. (You can also announce an event in local newspapers and through women’s organizations, etc.). Prior to the forum, they drafted a press-release on the event and sent it to select reporters and news anchors at local television stations (along with performing follow-up phone calls). This resulted in vulvodynia coverage in local papers and health sections of the evening news. If you are interested in setting up an event of this kind, please contact Chris Veasley. Write to or Meet with Your Elected OfficialsAnother important way to raise awareness in your community is to educate your local legislators and let them know that this is an issue that is important to his/her voters. You can research contact information and focused interests of your federal and state legislators by entering your zip code at http://www.congress.org. Once you have put your list together, decide if you would like to send those legislators a letter from you and other women in your district, or if you would like to set up a formal meeting with his/her staffer. Please see this sample letter for modification and use. During a meeting, you may have the opportunity to discuss a little bit about your personal situation (and/or those of other women who attend). Urge the legislator to support increased research funding for vulvodynia at NIH, as well as educational efforts aimed at increasing the knowledge of health care providers. You may want to consider asking a local health care provider to join you at this meeting as well. NVA also organizes and executes an annual Advocacy and Awareness Campaign each spring where women across the country meet with and send letters to their elected officials. If you are interested in participating in this campaign, please contact Christin Veasley at 401-398-0830 or chris@nva.org. If you have any trouble opening/viewing these documents, please contact NVA’s administrator, Gigi Brecheen at gigi@nva.org or 301-949-5114. The National Vulvodynia Association is a nonprofit organization that strives to improve women's lives through education, support, advocacy and research funding. The NVA is not a medical authority and strongly recommends that you consult your own health care provider regarding any course of treatment or medication. Last Updated on February 2, 2012 |
