By Holly Hedd
“The moment I saw those images, it changed my life.”
This common phrase is uttered over and over by the group of women gathered for the first board meeting of Lipedema Canada. Looking at the group draped in their daily wear, you would never know they share a challenging medical condition. And that’s the point.
Lipedema is a connective tissue disorder that affects millions of people in Canada and many more worldwide. This chronic condition is characterized by a symmetric buildup of adipose tissue (fat), most commonly in the legs and arms, but can show up in other areas as well. Often the fat can feel like rice, peas, or walnuts beneath the skin. The condition may cause pain, swelling, and easy bruising. The intensity of pain varies, as does a sense of heaviness in the limbs, and fatigue. It can also lead to mobility problems and causes long-term mental stress.
The condition is said to affect 11% of those assigned female at birth.[1] It tends to appear around puberty but can also develop or become more pronounced during significant hormonal changes, such as pregnancy and menopause. The true estimate of those affected is currently impossible to know given the lack of research. What is known, though, is what it is not, despite continued confusion or ignorance.
Lipedema is not Obesity
Lipedema is not obesity. Fat dispersion and composition is different in lipedema, and those with it typically do not have diabetes, high cholesterol, or high blood pressure. In later stages, however, obesity and lipedema can be present at the same time, although they remain two separate conditions. Lipedema fat is often resistant to diet, exercise, and bariatric surgery.[2]
“I’ve spent years being dismissed by those who were supposed to help me.” Crystal Ellingsen has sought medical intervention in Nova Scotia for the symptoms of lipedema throughout her adult life, even before she knew what it was. “Thirty years later, many doctors will not even entertain the possibility that a patient’s pain, mobility, inflammation, and other issues could be a result of lipedema. All they see is the weight.”
“Thirty years later, many doctors will not even entertain the possibility that a patient’s pain, mobility, inflammation, and other issues could be a result of lipedema. All they see is the weight.”
In Canada, and in countries around the world, there is a lack of awareness, and therefore a lack of support for this chronic medical condition, despite having been documented as early as 1940.[3] The measures that have been determined to help include wearing compression garments, having manual lymphatic drainage sessions, pneumatic compression devices, and surgical intervention through lipedema removal surgery, to name a few. All of these are costly, yet they are not covered by Canada’s health care system to treat lipedema.
United for Change
In June of 2023, a group of women joined forces to challenge that system. Knowing that health care is under provincial jurisdiction, they realized harmonized change would be a monumental task. The plan was to find a national representative from each province and territory to create a national not-for-profit organization to raise awareness and collectively drive the efforts. Each representative would then work on creating a provincial organization to effect change there. Saskatchewan was the standout, having established Lipedema Saskatchewan five years ago.
“We were the first out of the gate trying to draw attention to this, and we were so excited to see other provinces come forward to work together,” said Connie Young, Director for Lipedema Saskatchewan. “For real change to happen, it has to happen across Canada. Medical professionals must share information and governments need to provide support across the country, not only in one province.”
In less than a year, this group has made incredible strides. Now an incorporated not-for-profit, Lipedema Canada has eleven board members from nine regions, and is recruiting members for the remaining provinces as well as other experts for a medical advisory board. It also has gained support from important allies, such as the Lipedema Foundation, a US-based organization at the forefront of lipedema research.
“We have interest from doctors, nurses, and other medical professionals who want to help us bring this condition to the forefront and facilitate access to these heavily needed services,” said Emma Cloney, Vice-President, Lipedema Canada. “Raising the level of knowledge out there is the first step.”
“For real change to happen, it has to happen across Canada. Medical professionals must share information and governments need to provide support across the country, not only in one province.”
Ready to Launch April 1
The organization’s website is set to launch on April 1, with a suite of resources for both medical professionals and for those who have the condition. These include brochures, checklists and sample letters for diagnosis, and information for claiming health-related costs to the Canada Revenue Agency.
“The most important thing we are trying to accomplish is to foster a sense of community,” said Carolyn Green, Lipedema Canada President. “We see the same comments and questions over and over on our Facebook pages for the national organization and for each province. They are worried, they are frustrated, and they feel alone. They cannot continue to go unacknowledged and to see the state of their health decline. We are committed to changing that.”
[1] Donald W. Buck, II, MD, Karen L. Herbst, MD, PhD. “Lipedema: A Relatively Common Disease with Extremely Common Misconceptions.” Plast Reconstr Surg Glob Open. 2016 Sep; 4(9): e1043.
[2] Herbst KL. Rare adipose disorders (RADs) masquerading as obesity. Acta Pharmacol Sin. 2012;33:155–172. [PMC free article] [PubMed] [Google Scholar] [Ref list]
[3] Allen EV, Hines EAJ. Lipedema of the legs: a syndrome characterised by fat legs and orthostatic edema. Proc Staff Meet Mayo Clin. 1940;15:184–187. [Google Scholar]
