04/05/2019
My name is Kim Wilson - I'm 56 years old - from Agassiz, BC Canada. It took 5 torturous years to win an appeal for my recent Out of Country Consult with my hero, Dr. Herbst – diagnosing me with Dercum's disease, and a few other unexpected conditions that explained so much. Not only did Dr. Herbst treat me with compassion and respect (something I do not receive here in Canada much), but she gave me hope!
A Port Wine Birthmark that has a significant number of lipomas growing directly under it suggested to her it may be the source of my lipomas so, further testing was required but only available to me online through long distance diagnosis from Boston Children’s Hospital. My specialist at the time of my return was not anxious to help so I started calling. After many calls/all dead ends, I almost gave up. A few days later I was contacted by BC Children’s hospital regarding this very rare KTS, and they put me in front of a team of doctors who felt it was not involved, but one of the doctors agreed to take me on as somewhat of an experiment, involving multiple surgeries to improve my day to day struggles managing sources of added pain and mobility issues and some kind of surgery to remove some of the problematic lipomas through excision or liposuction to avoid making me look like Frankenstein. I am just waiting to hear about surgery dates, but I insisted he contact Dr. Herbst beforehand to ensure my complex issues are discussed. I promised Dr. Herbst that I would be her best advocate in Canada as I was leaving.
I have started a fb page called Dercum's Disease & other Fat Disorders in Canada, in an attempt to gather as many Canadians or anyone around the world that wish to support us in asking/demanding immediate change to educate and train Canadian doctors about these painful fat disorders, and finally stop the fat shaming/bias that currently goes on here. It has done so many harm, and I have personally been though enough! I started at the top by writing to our Prime Minister, and to my surprise this morning his office replied to my plea to send a Canadian specialist to the 2019 Fat Disorders Conference in Baltimore and start the process to catch up to the USA and UK by approaching Dr. Herbst. Mr. Trudeau’s office has assured me the request and my story have been heard and have forwarded my correspondence to the Health Minister of Canada to review and respond! Baby steps, but positive steps!
