Overwhelmed by the multiple stresses of life and the strain on her body from uterine fibroids, a personal tragedy propels Holly to see her situation from a new perspective. How does this lead Holly to become part of new patient movement?
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?
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…
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…
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…
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…
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…
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…
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?
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…
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…
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…
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…
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…
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…
Every patient has a story. Telling it makes us feel good. When the story is well told and comes from a place of honesty, it has the power to change lives.
Storytelling has a remarkable effect on how we experience our own journey. Share your story in writing, video, art or photography.
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The Walking Gallery is a walking wall of individuals who wear personal patient narrative paintings on their backs. They are attending medical conferences where often there isn’t a patient speaker on the dais or in the audience. They are providing a patient voice, and by doing so, are changing the conversation. While creating national health policy medical professionals and government officials are often more reliant on aggregate data sets, bar charts, graphs and statistics, rather than the whole picture of […]
By Kristen Knott Written @ 4:45 am November 21, 2013 It is November 21 at 4:45 am. I am lying in bed staring at the ceiling. I have already been up twice tonight with hot flashes and visits to the washroom. My mind is racing. It is my last chemo treatment today at Juravinski. I thought this day would bring joy and excitement, yet the emotion I feel is complex, a mixture of relief but also sadness. I have been […]
It is a cultural artifact that we regard medical professionals as authority figures. We expect them to command us and we are expected to obey. Hence the phrase: ‘doctor’s orders’. This relationship does not work for Type 1 Diabetes. It infantilizes the patient, which is the worst possible outcome. A person living with Type 1 needs a team of professional health care providers (endocrinologists, opthamologists, general practitioners, nurses, dietitions, psychologists, social workers, diabetes educators) to help with management of the […]
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
Impromptu End of Life conversation captured on video It started out as an experiment: there was a new video camera, an excuse to get together with a good friend who ‘does the lighting’ for movies and commercials. He makes everything look beautiful. And why not get in pizza and invite some friends, and get a proper lighting lesson and camera test. Pizza topping had to take into account various cultures: Hindu, Muslim, Mexican-Catholic, Irish-Catholic, Anglican. Chowing down, the ‘what’re you […]
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 […]
