New patient advocacy group to galvanize engagement around under-diagnosed women’s health condition
WASHINGTON, DC, February 28, 2018 /24-7PressRelease/ — CARE (Community, Action, Research, and Education) About Fibroids, a recently-formed nonprofit women’s health organization dedicated to increasing awareness of uterine fibroids, today unveiled a patient-centered online resource to help educate and inform patients about uterine fibroids. The website, www.CAREaboutFibroids.org, serves as a one-stop shop for the “411” on uterine fibroids, as well as a compilation of resources and published studies on fibroids.
The website builds on CARE About Fibroids’ mission to elevate the conversation surrounding uterine fibroids, an under-recognized condition that can seriously impact the health and fertility of millions of American women each year. CARE About Fibroids’ carefully-curated and scientifically-reviewed online resource is accessible to anyone interested in learning more about fibroids.
In conjunction with the launch of the online presence, CARE About Fibroids today introduced Facebook and Twitter accounts to amplify the resources available on the organization’s website and further engage with patients and health care stakeholders. The accounts are www.facebook.com/CAREAboutFibroids and @CAREAbtFibroids.
“We are thrilled to provide both patients and the public at-large with relevant, independent, and scientifically-validated information on uterine fibroids as part of our focus on bringing the conversation around uterine fibroids out of the shadows and into the light,” said Jenny Rosenberg, the nonprofit organization’s Executive Director. “Women can click onto our website, CAREAboutFibroids.org, and quickly find out if symptoms they’re having — such as painful periods or extreme bleeding — could be related to uterine fibroids. We hope that fostering this conversation alone will help close the three- to five-year wait it usually takes a woman to see a doctor about her fibroids.”
About Uterine Fibroids
CARE About Fibroids is launching its online resource at a time when estimates are that between 70 percent and 80 percent of women will have uterine fibroids by the age of 50. Yet, due to lack of awareness or the belief that fibroids are a problem to be endured, many women go undiagnosed and untreated.
Among women in the U.S., uterine fibroids are significantly under-diagnosed and under-treated, despite being declared a public health burden by the National Institute of Health (NIH). Collectively, the price tag of symptomatic uterine fibroids, including lost work and disability, approaches $34 billion a year.
According to recent studies, women with “symptomatic” fibroids wait, on average, more than three years before seeing a doctor and almost a third wait up to five years. This lag can result in anemia, urinary tract infections, urinary obstruction, and kidney damage as well as cause women to experience body-issue anxieties, lower self-esteem, and worries about relationships and sexuality.
The problem is especially important for black women because, compared to other American women, African-American women are three times more likely to develop fibroids, experience them at an earlier age, experience twice the pelvic pain and swelling, and have three times the rate of anemia caused by the fibroids. As a result, black women also have four times higher rates of hospitalizations and are three times more likely to undergo a hysterectomy. Similarly, myomectomy — the other form of fibroid surgery that leaves the uterus in place — is about seven times more common among African-American women.
In terms of the economic impact, more than $9 billion is spent annually for surgery, hospital admissions, outpatient visits, medications, and other direct medical costs for fibroid treatment. Symptomatic fibroids cost the economy $17 billion annually in absenteeism, lost work, and short-term disability. An additional $8 billion is spent annually on fibroid related pregnancy complications.
CARE About Fibroids to Spark a National Dialogue on Uterine Fibroids
CARE About Fibroids is taking the lead in mobilizing women’s health advocacy and policy-focused organizations to build greater awareness of uterine fibroids, as well as a sense of urgency around the need for improved diagnosis, expanded and better treatment options, and enhanced patient access to appropriate care.
CARE About Fibroids is headquartered in Washington, DC, under the direction of its Executive Director Jenny Rosenberg and a Steering Committee of leading independent nonprofit patient/consumer organizations focused on women’s health. Currently, the steering committee is comprised of (in alphabetical order): the Black Women’s Health Imperative, COSHAR Healthy Communities Foundation, HealthyWomen, and To Know Is To Know.
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