Walk aims to make cystic fibrosis history

Walk to Make Cystic Fibrosis History takes place May 28.

Tim Collins


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.


Just Posted

B.C. Guide dogs is looking for volunteer puppy raisers

Labrador retrievers need to learn obedience and socialization before heading to work

Colwood Elementary gets new inclusive and accessible playground equipment

Parks and playgrounds on the West Shore have equipment for everyone

Tent city campers prepare to leave Uplands Park

Vehicle access remains restricted at Cattle Point

A year in tent city: Timeline of Camp Namegans

Since September 2017, Victoria’s homeless camp has set up in more than 20 locations

Tommy Chong says cannabis legalization makes him proud to be a Canadian

Legendary marijuana advocate and comedian celebrates cultural milestone at Kelowna event

Singer k.d. lang receives Alberta’s highest honour

Celebrated singer-songwriter k.d. lang received the Alberta Order of Excellence in Edmonton

Find your future at Black Press career fair in Victoria

More than 70 booths expected at Bay Street Armoury on Oct. 25

Crime Stoppers most wanted for Greater Victoria for Oct. 19

Greater Victoria Crime Stoppers is seeking the public’s help in locating the… Continue reading

POLL: Do you support amalgamation for communities in the Capital Region?

Residents in Victoria and Saanich will be voting on Oct. 20 on… Continue reading

B.C. tickets win big in Lotto Max draw

Jackpot carried over; B.C. tickets share Max Millions prizes

‘Mom, I’m in trouble:’ Canadian faces 10 years for alleged graffiti

Brittney Schneider, another tourist caught spraying message on walls of Tha Pae Gate in Thailand

Feds consulting on national anti-racism strategy behind closed doors

Heritage Minister Pablo Rodriguez says people still face systemic racism in some communities

Enbridge aims for mid-November to finish B.C. pipeline repair after blast

A natural gas pipeline that ruptured and burned near Prince George caused an explosion and fireball

Most Read