A Campbell River woman wants to give a voice to people with rare diseases like the disease she suffers from.
Kim Wilson has Dercum’s Disease, a rare fat disorder, but it took her more than five years to get a diagnosis; five years of anguish, shame and even ridicule, not to mention the pain and discomfort of the disease itself and associated disorders.
“Most of the doctors and medical professionals did not believe me when I said my fat hurt, and that the slightest pressing almost anywhere really hurt me,” she says.
Eventually, she had to go of the country to get a diagnosis of Dercum’s Disease. Most doctors in Canada are not even aware of fat disorders, Wilson says.
Wilson has been suffering from the condition since she was a child.
“I’ve been in pain most of my life since the age of 4-5 years old. It all began as pain in my legs, and my Dad had to rub my legs for hours so I could go to sleep. The more I did in a day, the worse it was, and then I was diagnosed with fibromyalgia in 1980,” she says.
When, after growing up, she had children, she developed multiple painful lipomas in her sacroiliac (SI) joint that had to be removed due to pain when she leaned or press on them.
She always managed to work full time until a fall on the ice in January 2012 when she hurt her SI joint and her health took a nose dive from then on, changing her life forever. She had to stop working and then fought for a diagnosis over the next five years.
Through it all, she felt her condition was minimized and dismissed. She was able to get a medical marijuana prescription from a sympathetic doctor but attempts to get appointments with the few doctors who knew anything about Dercum’s Disease was impossible.
She then insisted on an “out of country consult” with world renowned fat disorders expert Dr. Karen Louise Herbst in Arizona. Wilson had to pay all travel and accommodation costs after having to appeal a decision to deny coverage of her consultation fee which she won. She had to pay the fee up front but was reimbursed later.
“It was like I’d won the lottery really,” she says.
Her diagnosis was confirmed by Dr. Herbst in 2018 but along with it came two additional diagnoses that appear common in this particular community – MCAS (Mast Cell Activation Syndrome) and HEDS (Hypermobility Elhers Danlos Syndrome).
With Dr. Herbst’s diagnosis in hand she eventually came under the care of a BC Children’s Hospital surgeon and was booked for multiple surgeries to improve her quality of life.
She now has a closed Facebook group called Dercum’s Disease & Other Fat Disorders in Canada (https://www.facebook.com/groups/279451472953951), through which she hopes to locate others across Canada suffering with a diagnosed or undiagnosed fat disorder of any kind.
“What we really need is to be given a voice, and be seen as the real medical patients we are,” Wilson says.
As it turns out, April 4 is World Dercum’s Disease Awareness Day and Wilson hopes the Facebook group will gather Canadians together who have a diagnosed fat disorder or suspect one or have a family member with one. the group also wants to support each other with shared knowledge on hos to navigate help as it is in Canada.
Fore more information visit Fat Disorders Resource Society: https://www.fatdisorders.org/