|
Do you Shop at Amazon or GoodShop?
You can raise funds for vulvodynia research when you shop online. Simply click on one of the links below before you go to Amazon or GoodShop and a percentage of your purchase price will be donated to the NVA. Thank you!
NVA’s New Online Resource Center
A Letter from our Executive Director
When I suffered from severe disabling vulvodynia 15 years ago, there was nowhere to find treatment information
and support. Fortunately, it won’t be the same for you. We revised our website so you can immediately access our self-help guide and in-depth articles by vulvodynia specialists on different treatments. Click here to see what’s available at our online resource center. Read more…
NVA Seeking Participants for Cost of Illness Survey
The NVA is seeking US women diagnosed with either generalized vulvodynia or vulvar vestibulitis syndrome (aka vestibulodynia) to participate in a cost of illness survey that asks questions about lost work hours and out-of-pocket expenses related to having vulvodynia. From a cost of illness survey, analysts can calculate to what extent a particular health condition impacts our economy. It is important for NVA to have this information to convince members of Congress and NIH staff of the great need to increase funding of vulvodynia research. Participation requires only 3 hours of your time over the next 6 months. With the use of a NVA-supplied calendar, you will keep track of your vulvodynia-related expenses, such as prescription medications, doctor visits and over-the-counter remedies. Participants will anonymously log onto NVA's web site once every four weeks (for six months) to record expenses. Each time you log on, the survey will take 5-10 minutes to complete. Upon enrollment, you will receive a complimentary copy of NVA’s self-help guide. After completing the study, NVA will provide you with a complimentary 1-year subscription to our newsletter. For additional information, or to participate, please visit http://www.nva.org/costsurvey
New York Times Covers Vulvodynia
NVA's conversations with renowned health columnist, Jane Brody, led to her January 29th article in the New York Times. Please take a minute to send a brief thank-you note to the editor and Ms. Brody and let them know you'd like to read more about vulvodynia in the future.
New Insights Into Genital Pain in Women
by Jane E. Brody
When a young woman complains of genital pain so severe that it makes sexual intercourse all but impossible, her partner may jump to the conclusion that she has a phobia about sex. But what if that same woman also experiences excruciating pain when trying to insert a tampon, undergo a pelvic exam, wear a pair of jeans, ride a bicycle or go jogging? Can phobia explain all those problems? Not very likely. In fact, studies have shown that sexual phobias are rarely the explanation for a condition known as vulvodynia... Read more…
NIH Launches First-Ever National Vulvodynia Awareness Campaign
On October 24, 2007, the National Institutes of Health launched the first-ever national vulvodynia awareness campaign at the National Press Club in Washington, DC. Among the nine speakers at the event were Christin Veasley, NVA’s Associate Executive Director, Hope Haefner, MD, Director of the University of Michigan’s Center for Vulvar Diseases, and Bernard Harlow, PhD, Chair of the University of Minnesota’s Division of Epidemiology and Community Health. You can read Ms. Veasley’s speech here or watch a videocast of the entire press conference on ORWH's web site.
This campaign, which resulted from NVA’s lobbying efforts on Capitol Hill, was spearheaded by the NIH Office of Research Women’s Health (ORWH) in consultation with NVA, and was joined by 30 government agencies and health organizations. As part of the campaign, a diverse group of courageous women with vulvodynia, ranging in age from 25 - 58, have come forward to share their stories with the media in the hope of raising public awareness of the condition.
The NVA, ORWH and the National Women's Health Resource Center have been leading the publicity campaign by contacting editors and writers at popular magazines, newspapers, and health and news websites. Following the launch event, for example, many internet sites, such as everydayhealth.com and earthtimes.org featured articles on vulvodynia and Dr. Laura Berman discussed chronic vulvar pain on her Yahoo health blog, The Art of Intimacy . Reporter Darla Carter wrote an article on vulvodynia for the Louisville Courier Journal and Denise Oliviera, a New York journalist and NVA member, wrote an excellent piece for the New York City Independent Media Center . One of NVA's strongest proponents for the past 10 years has been Phyllis Greenberger, MSW, president of the Society for Women's Health Research (SWHR). Shortly after the campaign launch, Dr. Jennifer Wider of the SWHR wrote an article on vulvodynia for HealthNewsDigest.com , which was subsequently picked up by numerous web sites, including Science Daily, AHN and MedHeadlines. In December, Dr. Pinn focused her monthly PodCast, Pinn Point on Women's Health , on vulvodynia. You can download the PodCast or read the transcript on ORWH's web site.
NVA and Actress Fran Drescher Speak at Capitol Hill Briefing
 |
In recognition of Gynecologic Cancer and National Pain Awareness Month, the US House of Representatives’ Cancer and Women’s Issues Caucuses joined forces to organize a briefing on gynecological cancer and pain disorders. The briefing was hosted by Representative Steve Israel (D-NY), co-chair of the Cancer Caucus. Emmy-nominated actress Fran Drescher described her personal experience overcoming uterine cancer and the creation of the Cancer Schmancer Movement. Sherry Salway Black, executive director of the Ovarian Cancer National Alliance, discussed her battle with ovarian cancer, and Dr. Richard Schlegal, chair of the pathology department at Georgetown University Medical Center discussed cervical cancer and his work on the new HPV vaccine. NVA’s associate executive director, Christin Veasley, summarized the overall impact of chronic gynecological pain on women’s lives and specifically described how vulvodynia affects quality of life. About 100 health staffers attended, with standing room only. Ms. Veasley’s presentation can be read here. |
