A group of Saskatchewan women have launched a new provincial advocacy organization for those suffering from Lipedema, and a local resident who helped found it says it’s long overdue.
The Saskatchewan Lipedema Association (SLA) officially received non-profit status this year. Now, the organization is looking to spread across the province and educate women about a disease that affects at least one in 10 women, but is still largely misunderstood.
“It’s exciting to see women coming together,” says Erica Bailey, a Prince Albert resident and one of the original group members who helped found the SLA. “It’s exciting to see the passion they all have, that they bring to this. It’s encouraging when I see other people find out about it and realize that there are some potential solutions out there. It’s encouraging.”
With June being Lipedema Month, the organization is looking to hit the ground running. They’ve partnered with Telehealth Saskatchewan for a live video presentation on the disease that will be available to women around the province.
Bailey said very few women know anything about the disease. At this point they’re just trying to get information out to the public, and to the healthcare community.
“That’s one of the big things. Healthcare providers need to find out about this disease,” she said. “They’re the ones who have the medical background to understand it. Right now, it’s like we’re managing our own medical cases because there’s not really anyone to talk to.”
Bailey herself is a Lipedema patient. The cause of the disease is not known, but doctors believe it’s a genetic condition. Unlike obesity, Lipedema patients see fat cells concentrated in their legs, thighs and sometimes arms.
Although she was an active basketball and volleyball player in high school, Bailey found it challenging to keep her weight from rising as an adult. Strict diet and exercise programs left her depressed and exhausted, with very little weight loss.
She eventually travelled to Germany and for surgeries on her legs and arms, paid for out of her own pocket. She also undergoes manual lymphatic drainage procedures back in Canada, which is partially covered by her employee health plan.
Today, she can go for 5 km walks with her husband without any difficulty, when only two years ago she struggled to go grocery shopping. She considers herself fortunate to have such a strong support group, and she’s hopeful the SLA can become that for other women suffering from Lipedema.
“There’s so many women that I’ve talked to who feel hopeless because they don’t have the resources to seek out answers for themselves,” Bailey explained. “They don’t know who to turn to.”
Increasing education and support are the organization’s short-term goals, but long-term Bailey said they’d like to so more money invested in Saskatchewan.
Their dream is to see the province create a Lipedema care centre where women can go for treatment and educational resources. Bailey says surgery is just one of many methods for treating the disease, and women need to know what their options are.
Their other goal is to make treatments more financially viable. Bailey said there is a clinic opening up in Ontario, but otherwise most women will have to go to Europe for specialized care. She’s worried to many of them can’t afford it.
“It’s not right that we have a disease where people who have the resources can get help, and those who don’t, can’t,” she said. “We live in Saskatchewan. The birthplace of Medicare in Canada, the home of Tommy Douglas, and we have a disease that affects 11 per cent of women and most of them can’t get any care. That’s just wrong.”
The SLA’s Lipedema video presentation is scheduled for Thursday, June 20 at 7 p.m. For more information about local viewing locations, or to register, please email firstname.lastname@example.org. Prince Albert’s viewing location will be at Victoria Hospital.
Those interested can also visit the group’s Facebook page, which includes links to articles about various studies on Lipedema. The SLA also operates a private Facebook page for women with Lipedema to talk about their personal experiences.