For about 15 years Dawn Champagne has been dealing with an extremely rare condition.
“Just over 15 years ago I began to feel unwell,” said Champagne.
“After seeing two local specialists with no answers for my symptoms of fatigue and muscle pain I felt I had no choice but to just wait until something became more obvious. With no answers, it seemed that everyone around me chalked it up to being stressed.”
But after dealing with this frustrating and undiagnosed illness for 13 years, Champagne finally got some real answers in January of 2014 when blood work revealed elevated liver functions.
“Within a month I was diagnosed and the news was devastating,” she said.
“It was also confirmed by results sent from my family doctor that I indeed had this for years.”
The disease is called primary biliary cholangitis (PBC), a rare autoimmune liver disease that affects an estimated 11,000 Canadians.
It was also revealed that Champagne wasn't diagnosed until she was in stage three of liver fibrosis.
She also realizes the disease is progressive.
“It’s possible that I may need a liver transplant at some point, but when or how long from now that would be I do not know,” said Champagne.
The disease limits the 50-year-old mother of three. She can only work part-time with her nursing position and has to at least have 10 hours of sleep and must do 20 minutes of moderate exercise each day.
“When I was first diagnosed initially I had a lot of unusual muscle pain and soreness and then it was just the fatigue I was left with,” she said.
There is frustration too as there are limited treatment options because of PBC being such a rare disease.
“The treatment options have been limited until now, there is just the one medication that can be used in the treatment,” she said.
“There is no cure, it is just managing the disease.”
Champagne tries to cope and says her faith along with writing about her situation helps deal with the stress of having a rare incurable disease.
However, there is hope for people like Dawn Champagne.
Health Canada recently granted approval for a new medication called Ocaliva, which is the first new treatment option in over 20 years for PBC.
“Obviously with the new medication coming up it is a bit of relief knowing that there is another step now instead of just taking the one medication and if that does not work you are just waiting until there is enough damage to have a liver transplant basically,” she said.
While Champagne is not on the new medication yet, she tries to keep a positive attitude. She knows her symptoms are under control and many other patients are not so fortunate.
