Tim Collins
VICTORIA NEWS
Cystic fibrosis was once known as “the children’s disease” by virtue of the fact that those afflicted with the disease were unlikely to see their teenage years.
In 1992, when identical twins and Victoria residents Simone and Abby McFee were diagnosed with cystic fibrosis, the median life expectancy was 24 years.
The twins are now 26 years old and the average age of survival has climbed to 52.
But their survival relies on daily drug therapies to cope with the disease’s attack on the lungs and digestive systems and other medical problems associated with the condition.
Abby takes about 30 pills a day, including enzymes to help digest food, and bone density drugs to combat the early onset osteoporosis stemming from cystic fibrosis. She also does about an hour a day of chest physiotherapy to strengthen her lungs.
“My lung function is only about 35 per cent and walking or climbing stairs is very hard, but I really am one of the lucky ones,” she said. “I have a full-time job as a medical receptionist and I’m really a pretty happy person. I really am pretty lucky. A lot of people with cystic fibrosis are worse off than me.”
Abby’s sister Simone, who works in Victoria as a legal assistant, is on a wait list for a lung transplant after a recent stint in the hospital initiated by an unusual shortness of breath turned out to be a collapsed lung.
Despite the setback, Simone has a similarly positive attitude.
“Mentally I’m quite happy and healthy, but I know depression and anxiety are quite common for cystic fibrosis patients. It’s because it’s always hanging over your head. You’re waiting for that other shoe to drop,” she said.
“For example, a simple flu can knock you down by 40 per cent and suddenly you’re in real trouble.”
Other aspects of the disease are less apparent. Simone recounted how both she and her sister have found romantic relationships quite hard to navigate and have tended to close themselves off from that aspect of life.
“It’s really a lot to ask of a potential romantic partner, given the anticipation of a lower life span and the fact that they may be asked to become a care-giver very early in life. A lot of people my age can’t handle that concept,” she explained.
On Sunday, May 28, as part of National cystic fibrosis Awareness month, the sisters will be joining hundreds of others at Esquimalt Park (1010 Tillicum Rd.) for the Walk to Make Cystic Fibrosis History. The walk goes from 10 a.m. to 1:30 p.m.
The walk is part of the Cystic Fibrosis Canada’s efforts to raise money for additional research and treatments. Since 2005 the walks have raised more than $28.5 million.
“I know there’s a million fundraisers for all kinds of illnesses out there, and I get that. But it’s so important to raise these funds for CF. Without the money that’s been raised in the past and the advances made as a result, neither my sister nor I would be here today. I want to see the next generation see a cure. That’s my dream,” said Abby.
To register for the walk or to donate visit cysticfibrosis.ca/walk.