SASKATOON - Connie Young and Dianne Wilson share a common challenge that affects their daily lives: lipedema, a chronic medical condition that causes a painful buildup of fat tissue, primarily in the legs and arms.
Despite being a largely misunderstood and underdiagnosed condition, these two women have learned to manage and confront their struggles head on.
For Young, it began when her mother and aunt went to see a cardiologist in Mesa, Ariz., in 2015. When the women walked into the doctor's office, he made an offhand comment about something genetic going on with their legs.
When Young heard about the comment the doctor made, she began to do research on the Internet, using keywords such as big legs and genetic, and finally found answers as to why she was unable to reduce the size of her legs. It was then that she discovered that she had a genetic condition called lipedema.
Young watched all the videos of the Fat Disorder Research Society Conference and learned a great deal about lipedema.
Doctors had been incorrectly diagnosing her with obesity or lymphedema when she actually had lipedema. This was in 2011 when they recommended she have bariatric surgery, but she was not interested in going that route and she is happy she did not.
She learned of three doctors in the U.S. who specialize in treating lipedema. Dr. Louise Herbst in Tucson, Ariz., is the main research, diagnostic doctor but the wait time was nearly a year. Young called Dr. David Amron from Beverly Hills, Calif., and she had an appointment within a month. By the end of March 2015, she was scheduled for surgery.
She had two surgeries a week apart that removed much of the abnormal fat cells between the skin and muscle. The first surgery was on both legs and thighs, and the second was the flanks, butt and under the arms.
After returning to Canada, Young required therapy three times a week in Weyburn, which consisted of wrapping her legs with foam and bandages for three months, and she wore compression garments 24 hours a day for a few months.
Young started a ketogenic diet. This way of eating does not get rid of the lipedema, but it does reduce the inflammation significantly. Since September 2016 and more so in the last two years, she has been eating a carnivore diet which consists of only animal products, and this has also helped her lose weight and keep it off and reduce her legs by nine inches.
Wilson also has lipedema, but also has lymphedema. She was diagnosed by her family doctor, Dr. Geldenhuys, who was from South Africa, and he had seen this in his country.
She was in her 30s and was told the disease was inherited from her grandmother who was also a patient of Geldenhuys. He had no idea what kind of treatment was available in Canada or what he could do to help Wilson. They tried many different kinds of medication to take the swelling down in her legs but none of it was successful.
In 2005, she was sent to a vascular surgeon and after many tests was told there was a problem. They did not know where they could send her for treatment.
In 2010, a therapist who was trained in lymphatic disorders came to Weyburn and her family doctor sent her there. Three times a week she drove to Weyburn to have her legs wrapped after a massage, and soon they trained her husband how to wrap. The trip to Weyburn went on for two years and she was trying compression garments, but it was difficult to find the ones that worked the best. After two years, the therapist could no longer help Wilson.
At a workshop, she met a therapist named Tracy Gardikiotis and learned about water exercise for lymphatic disorders, and she began to make trips to Regina. Since 2018 ,Wilson has been making trips to Regina for therapy to help with relief from the discomfort of the disease.
Wilson continues to wear compression garments every day; without them she does not know where she would be. Her husband and family have given her so much support and she is so grateful for this.
Another treatment was a pneumatic pump, which is an intermittent machine that has an inflatable garment attached to it, with multiple chambers, like balloons that inflate one after the other to stimulate the flow of lymph in the right direction. She started using the pump in Regina and drove in for the treatments.
Wilson was able to obtain a pump for her home through help from the Kinsmen Telemiracle Foundation and the provincial government, as all the traveling was putting a strain on her health.
There is limited knowledge in Saskatchewan about this disease and Wilson and Young want to get the word out that these fat cells are not just related to weight, it is a disease that is difficult to live with.
Both women have felt fat shaming over the years.
A group of women formed the Saskatchewan Lipedema Association and on Sept. 20 attended the 70th annual Family Medicine Conference at the University of Saskatchewan as exhibitors.
They provided information on the disease and pamphlets on what occurs to the body with the sickness.
Lipedema is characterized by an abnormal accumulation of fat, primarily in the lower body, leading to disproportionate body shape and various physical symptoms such as pain, tenderness and bruising. Often the disease is misdiagnosed, resulting in incorrect treatment and worsening symptoms.
It is their goal to raise awareness about the disease and that it is not just a fact of people getting fat.
Through a donation from the Bear Claw Casino, they are able to print pamphlets to place in White Bear First Nations and Carlyle, but other expenses come out of their pockets.
It has been a long road for these two women, but it is one they want to share with others, so they do not have to go through the struggles they have had in the last years.
It is their goal to advocate for women with lipedema and increase awareness in the public and health-care sector.
