How do patient advocacy groups get started? What motivates people to get engaged and involved? How do they become enabled and empowered?
A milestone event was held on July 20th, 2013 in Toronto to highlight the plight of women suffering from uterine fibroids and the associated heavy menstrual bleeding.
Women from across Canada who suffer from uterine fibroids came together to meet, share and brainstorm to create the first authentic patient voice in Canada regarding this important area of women’s health.
The significance of this event lies in the impact of this condition on the whole patient experience from living with the disease, diagnosis, treatment to follow up. Uterine fibroids account for more hysterectomies in Canada than any other condition. According to the National Uterine Fibroids Foundation (NUFF) in the U.S., up to 80 percent of all women have uterine fibroids. While the majority never have symptoms, one in four ends up with symptoms severe enough to require treatment and the experience can be horrifying.
In Canada, there is no organization such as NUFF, no unified or organized patient voice, to advocate for timely and appropriate care and treatment of women who have suffered unbelievable pain, discomfort, embarrassment, humiliation and anger due to uterine fibroids, related conditions of the reproductive system and perhaps most importantly, how our society and our health care system diminishes, or ignores symptoms.
At the end of this day, an emerging movement kick-started a new discourse in how we define, understand and most importantly, improve the outcomes for women on this patient journey.
Follow the personal stories of these women and their determination to make an impact and create change. Their struggle to amplify their voice illuminates the challenges to get a movement off the ground.
Will they succeed? Follow the trail of discussion via the graphic illustrations that recorded viewpoints, anger, anguish and joy.
Watch their stories. Discover whether this movement has a chance to grow, then share with us your predictions and any advice you feel can help them reach their goal. Have you got any suggestions for a name?
- All UF Team Stories
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It’s Fibroids, not Thyroid!
“Women’s health, aside from cancer, is not on the radar, not part of the conversation.” — Dr Nicholas Leyland, Professor and Chair of the Department of Obstetrics and Gynecology, The Michael G DeGroote School of Medicine, McMaster University If you’re a woman, you probably have fibroids — non-cancerous growths of the uterus, ranging in size from seedling to cantaloupe, that often appear during childbearing years. By age 50, as many as three out of four of women have fibroids and a third are symptomatic due to bleeding or the effect of the mass on surrounding tissue. “It’s fibroids, not thyroid!” Actor/ESL Read More…
Tagged Under: cheekyUF, UF, uterine fibroids -
Donald Trump calls it “wherever”. Meet history’s most maligned organ
“You could see there was blood coming out of her eyes, blood coming out of her wherever...” Donald Trump disparagingly refers to it as “wherever”. It’s the background of every ultrasound baby picture including those overshared by Michael Bublé on Instagram... It’s the place where we were all implanted and spent the first, most carefree nine months of our lives, but is there a more maligned, disrespected or mistreated organ than the uterus? The ancient Greeks who gave us democracy, tragedy and the Pythagorean theorem also came up with the wacky wandering womb. In Plato’s Timaeus, the uterus is described as a living creature that travels around the body, a uterine Randle McMurphy inciting Read More…
Tagged Under: cheekyUF, UF, uterine fibroids -
A Graphic History of UF
The Uterine Fibroid Experience: How does an objective perspective hear what we experience? Graphic recorder Leah Silverman spent a day with the UF team as an active listener and interpreting what she heard into illustrative notes to share with all of us. Click on the image to see a larger size and compare your experience with hers. More Stories From the UF Team For more information about the UF movement: Holly Bridges www.facebook.com/unhysterectomy Patricia Lee https://www.facebook.com/FibroidsGroup Read More…
Tagged Under: UF, uterine fibroids -
Patricia
Determined to find ways to impact the Canadian health system as it pertains to Fibroids, Patricia turned to the internet, forming a Facebook group with surprising results. More Stories From the UF Team For more information about the UF movement: Holly Bridges www.facebook.com/unhysterectomy Patricia Lee https://www.facebook.com/FibroidsGroup Read More…
Tagged Under: UF, uterine fibroids -
Mazal
Faced with a rush of uncontrollable bleeding from an unknown source, Mazal gets help from the least expected family member. More Stories From the UF Team For more information about the UF movement: Holly Bridges www.facebook.com/unhysterectomy Patricia Lee https://www.facebook.com/FibroidsGroup Read More…
Tagged Under: UF, uterine fibroids -
Holly
Overwhelmed by the multiple stresses of life and the strain on her body from fibroids, a personal tragedy propels Holly to see her situation from a new perspective. More Stories From the UF Team For more information about the UF movement: Holly Bridges www.facebook.com/unhysterectomy Patricia Lee https://www.facebook.com/FibroidsGroup Read More…
Tagged Under: UF, uterine fibroids -
Paragi
It took several years and visits with multiple specialists for Paragi to get a diagnosis and treatment plan that she would accept with full knowledge of what the risks were. More Stories From the UF Team For more information about the UF movement: Holly Bridges www.facebook.com/unhysterectomy Patricia Lee https://www.facebook.com/FibroidsGroup Read More…
Tagged Under: UF, uterine fibroids -
Shannon
Shannon started experiencing fibroids at age 25. Engaged to be married and planning a family, the threat of infertility loomed large. More Stories From the UF Team For more information about the UF movement: Holly Bridges www.facebook.com/unhysterectomy Patricia Lee https://www.facebook.com/FibroidsGroup Read More…
Tagged Under: UF, uterine fibroids
For more information:
Holly Bridges
www.facebook.com/unhysterectomy
Patricia Lee