Organization aiming to help people living with lipedema find resources and healthcare launching in Canada

A new organization with ties to nearly every province and territory in Canada is aiming to change how the country is approaching healthcare for people who are struggling with lipedema.

“We’re it for lipedema in Canada, and we’re really excited about it,” said Emma Cloney.

Lipedema is an illness that causes painful fat buildup and swelling in the arms and legs, leading to immobility. It affects 1 in 11 women and in rare cases, also men. Lipedema progresses through three stages into end stage, and Cloney says there are many people in Canada who are struggling to get a proper diagnosis and care.

“The struggle for lipedema, the first thing is to even know if they have lipedema because when they go and ask their doctors … there’s no answers,” explained Cloney. “When you do figure out you have lipedema and you know that’s what you have, and you need to find a Canadian doctor who can offer you care and a diagnosis and confirmation and suggestions about what do you do to manage it, it doesn’t exist.”

The condition is not related to obesity. Lipedema Canada said the asymmetric buildup of fat, specifically adipose tissue, can only be successfully treated through invasive surgeries in its later stages — and are often not covered by provincial healthcare.

Related: Winnipeg woman shares story of diagnosis and road to recovery from lipedema

“There is some treatment available in Canada. It’s what’s called our conservative measures … but our primary treatment and the most effective treatment for most is lipedema reduction surgery, and unfortunately, that’s not available in Canada at all,” said Cloney, who herself is still undergoing the last of multiple surgeries to treat stage 3 lipedema.

Cloney, who was first diagnosed in 2021, says the idea for an organization began as she and other patients began to hear similar stories from people across Canada who were trying to get care for the illness.

“I started connecting with other doers, movers and shakers in the lipedema community who were equally as passionate and emboldened by the really frustrating experiences we were having. We got together and started talking about the fact that, if we became united, very much like a union … what would that look like?”

The result: Lipedema Canada, operating in British Columbia, Yukon Territory, Alberta, Saskatchewan, Manitoba, Ontario, Quebec, New Brunswick, Nova Scotia, Prince Edward Island and Newfoundland is set to launch on April 1st.

“It is a group of people with lipedema that came together, acknowledging that we were all isolated in our own provinces and struggling for the same things and everybody came together and joined forces,” said Cloney, who is the organization’s vice president and lives in Winnipeg.

Cloney said once the website launches, it will offer resources for patients, support systems, clinicians and more. She said people can find resources such as letter templates to doctors and provincial governments, helping them to remove barriers in self-advocating for their care. The entire board of directors, who are scattered across the country, have lived experience and are in multiple industries so they can best serve the community’s different needs.

“We found people who were passionate in every province who were already leaders in those provinces, we brought them all together and we said, okay. How can we work as a team so that at a national level we can create resources?”

Lipedema Canada’s treasurer, Angel Anderson, said she wanted to be part of the organization so people did not have to go through the physical and emotional toll a diagnosis and treatment takes.

“There’s been women in Canada who haven’t been able to pay for their surgeries and are now in wheelchairs and just feel like there is no hope for them,” she said.

Anderson knows this all too well — she had to pay a total of $90,000 for four surgeries overseas to treat her stage 3 lipedema over the course of 9 months.

She says the experience of being treated in Germany was such a change from trying to access proper healthcare in Manitoba.

“I just so appreciated going there and not having to explain my condition, I didn’t have to justify it, I didn’t have to argue for proper medical treatment. They know lipedema and they’re experts in it. I just felt safe there and knew that I was getting the care that I needed for my condition,” she said.

Cloney said one of the goals for Lipedema Canada is to ensure Canadian care is comparable to care found elsewhere.

“We’re looking for parity of services and acknowledgement across the nation. Being organized like that can’t just happen in one province,” she said.

Cloney said the organization is also going to be approaching each provincial government to ask for conservative treatments to be covered.

“They’re a medically necessary service in Canada so that people who are already living (and) struggling to figure out how to afford lipedema treatment .. might have access to provincially provided services.”

She said Lipedema Canada is also working on a strategy to approach governments on covering life-saving surgery — something she and other board members have been advocating separately for years.

“We’re gonna make this better,” said Cloney.