Manitobans at the forefront of new non-profit created to help people living with lipedema | CBC News

A group of Canadians have banded together to bring more awareness to a chronic disease by creating a countrywide non-profit. 

Lipedema Canada incorporated as a non-profit in January, and will launch its website Monday. It aims to provide information for those living with the disease, but also for medical professionals to properly diagnose it and help create a greater understanding of the condition for members of the public. 

“I just want people to find out sooner,” said Angel Anderson, who represents Manitoba within the non-profit.

“I don’t want [people] with lipedema finding out when they’re already at stage 3 and it’s impacting their mobility.” 

Lipedema is a disease that causes painful fat buildup and swelling in the arms and legs, causing pain and immobility. If left untreated, it can lead to another serious condition called lymphedema, marked by a buildup of fluid that can lead to cellulitis and even sepsis. 

Hormones and genetics play a role, but the disease is not caused by obesity or a product of diet and exercise. 

Anderson has lipedema herself and said Manitoba Health previously refused to cover her lipedema reduction surgeries because they deemed them experimental. So instead, Anderson went to Germany starting last May for a series of four surgeries over nine months. 

The cost of those procedures was around $90,000, but Anderson said they were life-changing. 

“I get emotional talking about it because it’s just like, we’re so passionate about it, and I’m so fortunate that I had the resources that I could pay for it before I got to the point of being in a wheelchair,” said Anderson.

“Because really, it’s a progressive disease and it is going to just continue to get worse unless something is done.” 

Organization to reach every province

Anderson said she didn’t find out she had lipedema until she was 48, but had had it since she was a teenager, and hopes the non-profit will help others catch it earlier. 

“I just really want people to know sooner, so they don’t get to stage three ever,” she said. 

Emma Cloney, who is also from Manitoba and has lipedema, said the non-profit’s origins trace back two years ago. She said people in the country have been frustrated and begging for services in Canada. 

“There was this constant conversation of saying ‘Gosh, I wish that there was a way that we could have some sort of national organization, or reach our governments in every single province,”’ she said.

Cloney, who will serve as Lipedema Canada’s vice-president, said at the national level there are 11 members on the board of directors. At the provincial level, she said each province has anywhere between four to 10 members on a board of directors. 

She said the ultimate goal for the organization is to make a place in the country where people can get reliable information both as patients and clinicians. It will also approach provincial governments to ask for coverage for services including compression and the physiotherapy that’s required for lipedema, she said. 

“We’re looking to approach the provinces as organizations, to put systems in place so that people don’t have to literally fight with the government to acknowledge the existence of their disease, and then fight for access to life-saving surgeries, life-saving treatments,” she said.

“Nobody should have to fight that hard for health care in Canada, nobody.” 

Meanwhile, Anderson says that the creation of the non-profit has been a long time coming. 

“I have no hope of getting reimbursed, that’s not even on my radar, that I would get reimbursed for the money I’ve spent,” she said. “I just don’t want other people to have to go through that..”