Bonnie Smith with her daughter Belinda Nickerson. Contributed photo
By Amy Woolvett
Four years ago, Barrington-born Belinda Nickerson walked into a clinical study and walked out with hope.
She was diagnosed with Cystic Fibrosis as a baby and has struggled with its effects in one way or another throughout her life.
She received a life expectancy of five years. As medicine advanced, her life expectancy did as well.
Currently, the life expectancy of a person with CF is 48 years old.
Nickerson has had to take as many as 50 pills a day, every day since she was diagnosed in order to control the symptoms of CF.
Often, it is difficult to fight off infection for a person with CF and the hospital becomes a familiar place.
“I am healthier than others with CF,” said Nickerson.
She only landed in the hospital every five years. Even still, the constant battle against CF symptoms including tiredness made it difficult to lead a normal life.
When doing an activity, even shopping with her mom, Nickerson would need to stop and have a nap.
She was constantly struggling to gain weight. With CF, nutrients have a difficult time being absorbed by the body.
She said it was sometimes difficult for others to understand because she didn’t look sick.
“It’s not how you look on the outside, it’s how you feel on the inside,” she said.
Through her life she has made and lost many friends with the disease.
“It’s hard having CF,” she said. “Sixty percent of the people I have met passed away already.”
There are many types of Cystic Fibrosis and Nickerson has the G551D mutation.
When Nickerson heard of a drug trial that would help her type of CF, she decided to sign on.
“I’m a risk taker,” she laughed.
It was a risk that would end up changing her life.
The drug, Kalydeco, is a medicine created by Vertex Pharmaceuticals for the treatment of CF sufferers six years and older who have the specific G551D mutation.
The drug worked. It was dubbed a miracle cure amongst CF sufferers with the mutation.
“I feel like a new person,” said Nickerson. “My lungs are healing, my energy is a lot better and I have gained so much weight I actually have to watch what I eat for the first time.”
Before the drug, Nickerson was only able to take on a part time job because of her frequent sick days that sometimes made life difficult.
“I’m an adult,” she said. “I have to pay bills.”
She happily reported she felt so well she was able to take on a second job recently.
Unfortunately the drug is only effective with six percent of the population of CF suffers.
Nickerson said she sometimes feels guilty she was able to benefit from the drug while her friends still struggle.
Tim Vallillee, a former Yarmouth man now living in the Annapolis Valley, was diagnosed with the genetic disorder at seven months old.
He has the same genetic mutation of CF but because he was sick when the study was started, he was unable to join.
The drug cost of $300,000 per year has prevented Vallillee from using it.
Nickerson was offered free use of the drug because she participated in the study.
“There is no reason he shouldn’t get it,” she said. “I wish I could give it to him.”
She said it would make sense for the province to fund the drug cost saying it often costs the healthcare system equal costs for hospital stays and tests now.
“It would be cheaper in the long run,” she said.
For now Nickerson continues to live her much healthier life.
“It’s a big change,” she said. “But it’s a good one.”