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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.

First UF GatheringFibroid 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 a gentle nudge to join from a core group of women who are leading the charge, the size of the community of women with fibroids is growing, mostly organically, and remains mostly virtual.

Size of community

CANFib.ca website visualizationThe community is pushing 8,000 so far, with more than 5,200 members and growing of Canadian Women with Fibroids (CanFIB) on Facebook (founded by fibroid survivor Pat Lee), almost 1,500 on Hysterectomy Alternatives on Facebook (started by UnHysterectomy author and fibroid survivor Holly Bridges) and several more belonging to the new Alberta Women’s Health Coalition (co-founded by Carmen Wyton, who is also the chair of the Alberta Premier’s Council of the Status of Persons with Disabilities).

“If there’s one thing I find on the Facebook group, it’s women come for the first time and say ‘Thank God I found a place where somebody understands,” said Pat Lee.

Not formally organized

The fact that this fibroid fighters community remains largely informal, without any real structure, speaks to its very raison d’être.

For the most part, members are in the prime of their lives, in their 20s, 30s, 40s and 50s, when they need their energy the most. Their schedules are packed with responsibility, working, raising children, volunteering, coaching soccer, car-pooling, caring for aging parents or approaching menopause.

The last thing they want is more responsibility.

Bit by bit by bit

Yet the fibroid forum was a big step towards formalizing a Canadian fibroid community, one that continues to offer women a safe place to meet, share their common experiences, learn and vent.

“Communities help people evolve and gain new perceptions, empowerment and strength,” said Pat.

In fact, communities give us a sense of identity; they help us understand who we are and what we are experiencing so we can feel part of something larger than ourselves. And in doing so, we can build momentum towards achieving change.

“Lived experience is the most powerful place from which to speak,” said Mercy , a founding member of the forum.  “No one can deny your story, so understanding it and communicating as completely and effectively as you can, in the most compelling way possible, helps you and others to get to that big picture idea of creating a society that works for everyone in the best possible way.”

The trick lies in patients and physicians working together to build a better, more accessible health care system for all.

My uterus gets no respect: the UF movement gathers steam

UF-Collab-logoBy 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.

StoriesArePowerfulThe 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.


Val explained why she fought for five years to save her uterus, the organ that simply gets no respect.


Mercy, who also underwent fibroid surgery five years ago, described her journey to save her uterus as “traumatizing.”

In our original series of stories Patient Commando highlighted the many gaps in the treatment of fibroids, the inconsistency in treatment between physicians, the lack of awareness in our society about menstrual disorders and, most important, the burden of illness women live with every day.

Now almost a year and a half after our last series, a new set of stories has emerged as we continue to examine the issue and track the progress and achievements of this group.

HaveAVoiceWhile many of the women attending the UF Collaborative Forum expressed frustrations similar to the original group, the big difference this time was having physicians sitting at the table, sharing insights into the challenges they face treating patients. For most of these women, it was their first opportunity to talk with physicians about fibroids outside of the therapeutic relationship. And the same could be said for the physicians who listened attentively to the compelling and gripping personal stories.

Watch in the coming weeks as we pull back the curtain on this incredible day. You’ll hear more from Val and Mercy and other women such as Pat Lee from Canadian Women with Fibroids.

All in all, we’ll discuss six main themes:

Community – What is this uterine fibroid patient group and what do they want to say?

Medicine – The Society of Obstetricians and Gynecologists of Canada has released new treatment guidelines for fibroids. How will this affect physician practice?

Awareness – How will the uterine fibroid message be heard?

Advocacy – Fibroid women have self-organized and even made submissions to the federal government to approve certain drugs. What else can they do, how, when and where?

Collaboration – How do they continue partnering with physicians and other potential partners who may be interested in helping them grow?

The future – Where is this movement headed at this fork in the road? What can they learn from others like the budding Alberta Women’s Health Coalition?

The fight against uterine fibroids in Canada has taken a turn for the better and is picking up steam.

 

For more information about the UF movement:

Holly Bridges

http://unhysterectomy.com/

Patricia Lee

https://www.facebook.com/FibroidsGroup


Click on the graphics to understand why this movement got started…

UF_130720_chart2


…And why it’s gaining momentum today…

 

UF-Collab-Forum (1)

Terry Pratchett: Shaking Hands With Death

Sir Terry Pratchett, the best sellling British fantasy writer who was only eclipsed by Harry Potter, died March 12 at his home at age 66. Pratchett suffered from a rare form of Alzheimer’s disease and was an outspoken advocate for assisted death.

The question I’m left with upon hearing this news is: Was his death UN-assisted?

Sir Terry, diagnosed at age 59, shared his journey with Alzheimer’s widely and publicly while at the same time sparking public debate on the issued of assisted death. From documentaries to lectures he travelled widely to examine the topic. Famously, he was quoted:

“I have vowed that rather than let Alzheimer’s take me, I would take it,” he said. “I would live my life as ever to the full and die, before the disease mounted its last attack, in my own home, in a chair on the lawn, with a brandy in my hand to wash down whatever modern version of the Brompton Cocktail some helpful medic could supply. And with Thomas Tallis on my iPod, I would shake hands with death.”

I trust he got the death he so yearned for.

This video is the famous Richard Dimbleby lecture at the Royal College of Physicians that he gave using actor Tony Robinson as his voice.

An Open Letter to Minister Lisa Raitt

Dear Minister Raitt,

rsz_raittlisa_cpc1Please accept my applause and congratulations for the courageous and open conversation you had on Canada AM about the details of your health issues.

Its estimated that as many as 20% of women suffer from fibroids. Your experience reflects that of many women – that “sometimes options are not presented” and “I didn’t know any of this until it was too late”. And as a consequence so many women suffer in silence and unnecessarily endure extreme treatments.

In case you don’t know, sharing your story is a breakthrough in leadership echelons for this important conversation. You are correct – there’s a lot of stigma attached to speaking about women’s conditions publicly. Usually its in whispers, in corners, or simply with tears of isolation. Women across the country have been addressing these gaps in treatment, diagnosis, and the social and economic impact by self organizing and sharing their stories.

Your leadership role model will empower women to be assertive voices and participants in their healthcare so that they can act, and get appropriate treatment, before its too late. We have been documenting the rise of women’s voices on the issue of fibroids specifically, and bleeding disorders in general and you can follow the stories of these courageous women who have been building a movement from scratch with little support. Their stories are documented here.

I can tell you that the women who contributed to our series of stories are all cheering your disclosure, as it reinforces their bravery to share and to empower others to do the same.

Leadership comes in many forms. It can be as simple as telling a personal story. Sometimes that’s all that’s needed to change lives. Welcome to the conversation.

Best regards

Zal Press

Executive Director
Patient Commando Productions
@ Centre for Social Innovation - Annex
720 Bathurst Street, Suite 200
Toronto, ON
M5S 2R4

To view the entire Canada AM interview with Lisa Raitt click here. Her frank talk about her health starts at the 5:40 mark.

Discover how a small group of women came together to start a movement dedicated to raising awareness about women’s health issues. Our multi-part series starts here.