by Holly Hedd
Walking into a doctor’s office is painful for a person with lipedema. Not just because the condition causes physical discomfort and limits mobility, but because their concerns are often dismissed.
Many are told, it’s nothing to worry about, it’s not abnormal. They are told it is weight-related, and losing will solve their problems. They are told they don’t have lipedema, because their doctor hasn’t been trained to recognize the signs.
Recognition. For those with lipedema, recognition is everything.
Lipedema is a progressive, chronic medical condition that leads to abnormal accumulation of fat in specific areas of the body, primarily the legs, and sometimes the arms and abdomen. Hardened nodules can be felt beneath the skin, and affected areas are often painful to the touch and bruise easily. Current research shows that mainly those assigned female at birth develop lipedema, but far too little research has been done to date to determine a true estimate of how vast the impact is.
But that lack of research, lack of awareness and understanding, lack of education, is what is preventing those living with this condition from accessing the healthcare support they desperately need.
However, strides are being made. Several advocates with lipedema were officially recognized in the Manitoba legislature on May 22nd for their work toward this cause. Emma Cloney and Angel Anderson were among those who proudly represented Lipedema Canada and Lipedema Manitoba. They spoke to ministers about the debilitating condition and efforts to advocate for healthcare across the country for those living with lipedema.
Emma Cloney and members of Lipedema Manitoba Association, and Lipedema Canada were recognized for their advocacy efforts in the Manitoba Legislature by Minister Lisa Naylor.
Read the full article here https://winnipeg.citynews.ca/2024/05/22/winnipeg-lipedema-manitoba-legislature-honour/
“It was incredible to be able to speak directly to government about the challenges that so many of us are living with every day,” said Anderson, president of Lipedema Canada. “I finally feel like we are being seen and heard.”
Lack of knowledge is a barrier to care
A significant barrier to the recognition and treatment of lipedema among healthcare professionals is the lack of knowledge about the condition.
“In Canada, there is no mandated formal training for lipedema as part of the standard medical curriculum, which places both clinicians and patients at a significant disadvantage regarding the diagnosis and management of this disease,” said Cloney, Vice-President of Lipedema Canada. “Progress for the lipedema community hinges on the education of practitioners starting at the medical school level, with a sustained commitment to enhancing clinical competencies as research on lipedema advances.”
Cloney previously made headlines for challenging the Manitoba government for failing to provide the support it had agreed to. Now, after joining forces with women in other provinces to start the national organization, as well as provincial counterpart, Lipedema Manitoba Association, that work is being acknowledged.
The key goals for these organizations are to raise awareness, build a supportive community, and to advocate for health services for people with lipedema. The community has already grown significantly through social media and the organization’s website is the top search result in Google on the subject. Being recognized by government will hopefully further contribute to their cause, raising awareness in important circles, thereby making it possible to introduce a standard of care for lipedema in Canada and subsequently access healthcare funding.
To learn more about lipedema visit lipedemacanada.org
Author: Holly Hedd
Holly Hedd is Lipedema Canada's Director of Communications.
