Manitoba lipedema advocates want more support, healthcare coverage in Canada

Lipedema advocates are calling on various levels of government across Canada to step up their coverage of the debilitating illness.

A rally for lipedema awareness was held Tuesday at the Manitoba legislative building – the first such rally in the province.

The advocates want more support from Canada’s healthcare system.

“It affects so many,” said Emma Cloney, the vice-president of Lipedema Canada. “One-in-nine people assigned female at birth could have lipedema. That’s 2.2 million Canadians. We can’t go on without this being in our medical schools, recognized in our healthcare systems and provided for by our public systems.”

Added Angel Anderson, president of Lipedema Canada: “We really want the governments across Canada to be covering those surgeries.”

Lipedema causes painful fat buildup and swelling in the arms and legs.

“It’s fat that you cannot lose through diet and exercise and patients suffer immensely from a lack of understanding,” Cloney told CityNews.

“It’s incredibly painful. It is disabling.”

The nine invasive surgeries that Cloney’s undergone so far – to remove fat deposits and excess skin – have all happened outside of Canada, as there are no doctors in the country who can treat the illness.

Seven of those were eventually paid for by the province of Manitoba after what Cloney calls “a long legal battle.” The other two were paid for out of pocket.

“I was unable to stand for more than five minutes or walk 50 metres,” she recounted. “I was looking at total disability and I was headed towards mobility aids and a wheelchair. After having my surgeries, I am now returning to work as a nurse in the province of Manitoba.”

Cloney, who’s also the president of Lipedema Manitoba, is waiting on her 10th surgery; it’s expected to be her last.

“It just should never be this hard to find healthcare,” she said. “And to those who said, ‘oh, once she gets her coverage she’ll stop fighting,’ that isn’t the case. My treatment is nearly concluded and the fight is nowhere near from done.”

Anderson, who is also the vice-president of Lipedema Manitoba, says progressing through the different stages of lipedema is irreversible, so early detection is key to preserve quality of life.

“Unlike me, where I did find out later in life, it was already impacting my lymphatic system where I have secondary lymphedema now,” Anderson said. “We really want that to not be the case for everybody.”

Manitoba’s health minister, Uzoma Asagwara, says the province is listening to the lived experiences of Cloney, Anderson and the rest of the lipedema advocates to make sure providers understand what’s needed to treat lipedema.

“We had the opportunity to meet with them, listen to their stories and we’re committed to continuing to listen to the community and work together to move this area of healthcare in the right direction,” Asagwara said.

“We know that part of the challenge with lipedema care, not only in Manitoba but across the country, is the lack of education, awareness and understanding.

“We’re gonna keep listening, working together and finding ways that we can move Manitoba in a better direction.”

Tuesday’s rally at the legislature took place during Lipedema Awareness Month.