Karolena Dempsey has been battling a rare health issue for many years. As frustrating as that fight is, it is the battle to get help with the disease is greater.
Dempsey’s journey began 11 years ago when she began feeling ill with muscle and joint pains. The now 40-year old mother was 29 by the time she was told by doctors it was likely stress, and that she was young and shouldn't worry too much about it.
“I knew my body and I knew something was wrong,” said Dempsey. “It wasn’t all in my head as they had said. I was in a lot of discomfort and pain. I needed to know what was going on.”
After some blood work in 2009, Dempsey was diagnosed with monoclonal gammopathy of undetermined significance (MGUS). That was the first real proof that more was happening here and it sent Dempsey on a long road of seeking answers.
Seeing five rheumatologists (dealing with joints and muscles issues) made Dempsey realize there was definitely a lot more going on than just the run of the mill arthritis.
“I was told there was more in my tests than would be with something more known and that my symptoms were not normal,” said Dempsey. “Apparently I was an exceptional case for blood work since it wasn’t lupus or arthritis. It wasn’t until 2014, when I saw Dr. Devon Turner who actually listened and believed me that there was something very wrong.”
The thinking and direction about her symptoms took a more dedicated turn and meetings at the Royal Victoria Hospital started to become more intense. Dempsey was sent to rheumatologist Dr. Halland, someone who was said to think outside the box. He felt Dempsey was suffering from the rare disease Schnitzler Syndrome.
While the causes of the disease are unknown, Dempsey was relieved to finally know what was happening. She thought that this diagnosis would allow her to begin to take care of it.
But Dempsey’s battle had only just begun — as a positive call about the insurance coverage turned negative in mere weeks.
After having been put on medication called Kinerert and put in contact with Kineret Hands On Program for Ontario (a go-between for patients, doctors and pharmaceutical companies), a three way conference call with KHPPO and her insurance companies exceptional drug department, Dempsey was approved for treatment.
“To have any comfort in life I was going to have to have a needle every day for the rest of my life,” said Dempsey. “The needles are fifty dollars each and that’s one a day, everyday. I was waiting for more information on my coverage only to have them turn around and say that I actually wasn’t covered. I was blown away and didn’t know how I was supposed to afford all this.”
After three tries and three refusals, Dempsey was eventually put on a Compassionate Release program, where the manufacturer supplies her with the treatment — but all that didn’t occur until January 2016.
Battling her disease and the ailments that go with it, Dempsey is now fighting to make sure this doesn’t happen to anyone else.
In February 2016, Dempsey joined with MPP Michael Harris’ Treat Rare Disease campaign and was sadly present when the motion was denied. That didn’t stop the determined Dempsey and she continued to join local groups that helped those with rare diseases, whether it was at the Barrie Community Health Center or cafe meetings.
Two of these events are coming up. First, on Friday Feb. 24, there will be a flag raising at Barrie City Hall. The 11 a.m. event will mark Rare Disease Day and the suffering that many go through usually unheard.
The second event is being held on March 4 from 2:30 to 5 p.m. in the City Hall Rotunda, where a Rare Disease Connection will take place. Rare Connect was started to help bring patients, doctors and politicians together in order to help start the conversation on how to assist. Guest speakers include Dr. Steven Rallis and MPP Michael Harris.
Dempsey hopes that the events are well attended and information about rare disease reaches a bigger audience.
“I am one of five hundred in the world with my disease and there so many other rare diseases that we need to help either cure or assist folks in dealing with,” said Dempsey. “There are a lot of charity events for well recognized diseases around the world, we are just getting this going and off the ground. One day soon, I hope, we will be fully addressed and taken care of by all levels of government.”
For more information on Rare Disease issues online.
Find more on Schnitzler Syndrome here.
