Fighting the scourge of fibroids with patient advocacy

By Zal Press and Holly Bridges Given the complex and frustrating journey so many women with fibroids must endure, what can women do to take more command of the journey and get better outcomes for themselves and others? We have heard how greater awareness of treatment options can empower women to advocate for themselves with their physicians. We have even heard from physicians themselves encouraging women to do so.

This kind of self-advocacy can make a huge difference on an individual level. But to drive real change in practice, the collective voice of women across the country needs to be leveraged. System change and health reform that will impact the lives of millions of women, not just one, is the result of collective advocacy. And that is what we’ve come to understand as a movement.

“You can spend a lot of time admiring a problem but no change will happen until you push on the systems that are causing the problem or the barriers that are preventing you from moving in new directions,” said Carmen Wyton, a social innovation champion, chair of the (Alberta) Premier’s Council on the Status of Persons with Disabilities and head of a new Alberta Women’s Health Coalition.

The recent gathering [...] continue the story

Physician heal thy profession: trailblazing fibroid docs shifting treatment paradigm

By Holly Bridges and Zal Press In its 2014 roadmap for the future, the Canadian Medical Association declared “its readiness to take a leadership position in confronting the hard choices required to make health care work better for Canadians”.

Part of the solution, promised the CMA, was its framework for transformation that included:

Building a culture of patient-centred care Enhancing patient access along the continuum of care Recruiting more health care providers trained in high tech medicine

While the CMA has a long way to go before all 72,000 of its members adopt patient-centred care to reduce wait times and fast-track better outcomes, there are pockets of practitioners who are demonstrating real leadership.

The recent Uterine Fibroid Collaborative Forum in Toronto, which saw both patients and physicians come together for the first time, offered a glimpse of this new patient-centred paradigm.

Some trailblazing Canadian gynaecologists who are on the front lines of treating women with fibroids surrendered a precious Saturday (from a workweek that is often 80 to 100 hours) to update patients on new treatment options.

Many of the gynaecologists who attended, such as Dr. Nicholas Leyland, Dr. Grace Liu, Dr. Ally Murji and even a young medical student, are true visionaries at the forefront of change. These surgeons are improving the lives of Canadian women yet often at their own financial peril (gynaecologists who practice minimally invasive gynaecology actually lose money because newer high tech alternatives pay half what [...] continue the story

Raising awareness of uterine fibroids: a collective responsibility

By Zal Press and Holly Bridges Eight thousand strong and counting. The voices of the women (and a few supportive men) of this organically driven nationwide collaborative are beginning to make inroads after a long two years. They are heard in traditional media, in online social media conversations, and in live events such as the second national forum in Toronto recently.

The biggest newspapers in the country have covered the issue. The late Barbara Turnbull, the Toronto Star feature health writer, brought attention to new treatments for fibroids.  Other Star writers highlighted the stories of personal suffering and courage of women who face limited choices in treatment and long, painful journeys to diagnosis. And The National Post ran a full-page feature on fibroids in a special supplement devoted to women’s health. Starting up conversations The strength of this collaborative, however, is its ability to turn online conversations into a support system that provides an easy way for sharing stories and information. Women suffer economic and social burdens, often hiding their condition from employers and families. In social media they have found solace in the experience of others, and gained knowledge of new treatment options that empowered them in their relationships with their physicians.

Despite these successes, [...] continue the story

Blood sisters:
fighting fibroids as one

By Holly Bridges and Zal Press Why is it that suffering brings people together?

Is it a sense of duty, compassion or something more primal?

When someone close to us is critically ill, or passes away, our immediate instinct is to gather together. To connect. To share. To laugh and to cry. Fibroid community is growing The recent Uterine Fibroid Collaborative Forum held in Toronto (the second in two years), where women with fibroids and expert gynecologists gathered together for the first time, was a salve of sorts -a grassroots coming together of women whose lives are at the mercy of their own bodies, disabled by monthly bloodbaths that leave women feeling desperate, exhausted and alone.

In other words, the collective suffering of these women, and their growing frustration over a lack of access to timely and effective treatment options, has created a new and growing community of Canadian women who are desperate for change. Their mantra is clear Our suffering is real, we deserve better and we are stronger as a community.

We are tired of waiting years for proper diagnosis and treatment.https://youtu.be/

We are tired of a health care system that seems to put us last.

We are tired of being tired. Whether through social media, word of mouth or [...] continue the story

My uterus gets no respect: the UF movement gathers steam

By Holly Bridges and Zal Press

In the second gathering of Canadian women who suffer from uterine fibroid tumours, patients and physicians alike rolled up their sleeves to share and learn how this group is beginning to influence better health outcomes and improved quality of life for the one in four Canadian women suffering from this condition.

The day was recorded on video and graphic illustrations that captured the emotions and intensity of the day.

The UF Collaborative Forum in Toronto was the first time that women and gynecologists came together to share their different perspectives on the gaps in health care that often leave women to bleed with limited choices of treatment. This groundbreaking event began the vital conversation between healthcare professionals and patients with the goal to establish a unique collaboration that tackles the critical issues affecting treatment and care.

The women who attended represented all stages of the uterine fibroid fight, including those facing surgery, those on the brink of emotional and physical collapse from years of suffering from painful and often uncontrollable bleeding, and those who have emerged victorious and symptom-free after hysterectomy or other treatments.

In our original series of stories Patient Commando highlighted the many gaps in the treatment [...] continue the story

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