Endometriosis Research Center Celebrates Disease Awareness Throughout Month of March in Honor of Women and Girls Living with Painful Illness
Source: Endometriosis Research CenterMar 03, 2008 14:11:05
Mar 03, 2008 – Backed by formal legislation, the Endometriosis Research Center (ERC) is once again celebrating March as “Endometriosis Awareness Month” in honor of all those affected by the illness. Endometriosis is a painful reproductive and immunological disease in which tissue similar to the uterine lining (endometrium) migrates outside the uterus and implants in other areas of the body.
The disorder, for which there is no absolute cure, affects over 5.5 million women and girls in the United States alone and over 70 million more worldwide. Often stigmatized as simply “painful periods,” Endometriosis is a puzzling and widely misunderstood illness. A primary cause of chronic pelvic pain, female infertility and a myriad of related symptoms, Endometriosis is a leading cause of gynecologic surgery, including more than half of the 600,000 hysterectomies performed in the U.S. annually.
Symptoms include pelvic pain at any point in a woman or girl's menstrual cycle, infertility, pain with sexual activity, gastrointestinal difficulties, urinary tract difficulties, fatigue, allergies, and immune system dysfunction. The disease can also implant in extrapelvic areas such as the lungs, diaphragm and in rarer cases, even locations like the brain. Recent research has also shown an elevated risk of certain cancers and autoimmune disorders in those with Endometriosis, as well as malignant changes within the disease itself. Researchers remain unsure as to the definitive cause of Endometriosis, which can only be diagnosed through surgery like laparoscopy, and there is no definitive cure. Current studies indicate that genetics, immune system dysfunction or exposure to environmental toxicants may be contributing factors to disease development.
Leading experts such as Robert B. Albee, Jr., MD, FACOG, ACGE and Ken Sinervo, MD, FRCSC, ACGE of the Center for Endometriosis Care, a specialty treatment center, believe multiple causative etiologies exist. The ERC maintains that Endometriosis is more than just simple "killer" cramps. “We continue to find that even now, Endometriosis remains misdiagnosed, misunderstood and ineffectively treated, despite being one of the most prevalent causes of pain in women and teens around the globe," said Michelle E. Marvel, ERC Founder and Executive Director. "Even in 2008, we see women and girls from all around the world continuing to suffer in silence with a disease that can be potentially devastating to every aspect of their lives," she noted. The economic impact of Endometriosis is staggering: American businesses lose billions of dollars each year in lost productivity and work time because of the disease.
Endometriosis knows no racial or socioeconomic barriers, and can affect women ranging from adolescence to post-menopause. It can be so painful as to render a woman or teen unable to care for herself or her family, attend work, school, or social functions, or go about her normal routine. Despite the hallmark symptoms associated with the illness, the average delay in diagnosis remains an astounding nine years, and a patient will seek the counsel of five or more physicians before her pain is adequately addressed and diagnosed.
Once diagnosed, it is not unusual for a patient to undergo repeat surgeries and embark on many different medical therapies in an attempt to treat her symptoms. Many such therapies carry significantly negative and long-lasting side effects, and none offer long-term relief. A growing number of younger women are being diagnosed each year, with studies indicating that as many as 70% of teenagers with chronic pelvic pain ultimately have Endometriosis proven by laparoscopy. Other reports show that as many as 41% of patients experienced Endometriosis pain early in life as an adolescent.
The illness can be quite disruptive and cause significant dysfunction, especially at a time in life when self-esteem, school attendance and performance, and social involvement are all critical. Many adolescents with Endometriosis find themselves unable to attend or participate in classes, social functions, extracurricular activities, and sports due to significant pain and other symptoms of Endometriosis.
Of even greater concern, recent studies have shown that Endometriosis may in fact have an even bigger impact on younger patients than older women: in patients under 22 years of age, the rate of disease recurrence was double that of older women (35% versus 19%). Studies have also revealed that the disease behaves differently in younger women; leading some researchers to believe it is a different form of Endometriosis altogether. “We are seeing the focus of research aimed at the infertility aspect of the disease, and treatment efforts continue to be directed towards medical therapies, rather than curative efforts for all women and girls,” said Marvel. “It is imperative that we recognize the far-reaching impact this illness continues to have on patients of all ages, not just those trying to conceive, in order to ensure that our daughters do not suffer as we have,” she said.
The ERC is an established 501(c)3 non-profit organization focused on research facilitation, providing education and support, and raising awareness. The ERC strongly advocates early intervention, timely diagnosis, and efficacy of treatment for the disease. Through the ERC's efforts to raise public awareness, the organization hopes to facilitate better support of patients, increase physician understanding of the disease, and raise research funding leading to more effective treatments and ultimately, a cure. The organization has long pioneered and led efforts to increase recognition of Endometriosis among local, state and federal policymakers throughout the nation since the organization was founded in 1997.
Through the ERC’s work, Congress previously passed the country's first-ever National Endometriosis Awareness Resolution, the first and only of its kind to formally recognize the disease and declare March as Endometriosis Awareness Month. The states of New York, Utah, Florida, Colorado, California, Wyoming, Pennsylvania, Michigan and others have also worked with the ERC to pass similar legislation recognizing the disease. The ERC is a completely free foundation available to anyone wishing to learn more about Endometriosis. The organization is sponsoring various educational, awareness and fundraising endeavors throughout March. For details, visit www.endocenter.org or contact the organization's Director of Fundraising, Denise Childs, at FundraisingDirector@EndoCenter.org.
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The ERC is an established 501(c)3 non-profit organization focused on disease research facilitation, providing education and support, and raising awareness about Endometriosis.
