Listening to Julie Rice talk, you might think she’s spent her life in medical research.
Terms such as osteopenia, pulmozymes, humalog, and heparin roll off her tongue as easily as most people talk about what they had for lunch or any normal everyday activity.
For Julie, those terms are indeed part of her everyday life, as she battles her lifelong nemesis, cystic fibrosis.
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The petite 33-year old redhead (“at least I am right now, she jokes”) has already defeated the odds.
“When I was a child, doctors didn’t expect me to live much past high school,” she said. “I’ve fooled them so far and I hope to continue.”
Julie is one of 4,000 Canadians with CF, about 12 of which are in Chatham-Kent. Nearly 1,900 variations of the gene are known to exist.
“The name of the defected gene is the CFTR (cystic fibrosis transmembrane conductance regulator) and it regulates the transportation of sodium chloride in the body,” Julie notes matter-of-factly. “It’s fatal.”
”The damage caused by CF limits lung function. Julie’s lung capacity is about one-third of an average person’s. “My lung capacity is just over one litre, while a person my age and size is about three litres.”
CF leads to persistent and ongoing lung infections that are aided by thick mucus that accumulates and must be loosened.
As far back as she can remember as a child, Julie’s parents would pound on her back to try and loosen the mucus.
“I joke that I was beaten by my parents twice a day,” she said. “We went through it in the morning and again at night. I had to be home by nine o’clock every night, even in high school.”
Instead of the “beatings,” Julie now uses a special vest to provide vibration that loosens the mucus.The device looks like a life preserver. She puts it on, hooks it into an adapted air compressor and turns it on. The machine forces air through the vest and vibrates her torso.“The vest costs about $15,000, but it was donated to me to use,” she said. “I think the person who had it before me died.”For someone so young, Julie has seen many in the tight-knit CF community claimed by the disease.
“Some of my best friends have died from this,” she said. “I made a sign for a CF bake sale with their pictures on it. I almost had to add a second board.”
She said because CF is relatively rare, it doesn’t attract the interest of the public.
“Unfortunately a lot of people know someone who has heart disease or cancer so they can relate to it. What I have seems really foreign and yet one in 30 people carry a copy of the mutated gene which causes CF. The disease only occurs when both parents are carriers,” she said.
Even support for those with CF is different than most.
“I know a lot of people with CF but we’re not really encouraged to get together because of the risk of various lung infections,” she said. “I’m not contagious in any way but the lung infections I have (which have no effect on a non-CF sufferers) could spread to people who have it.”
May was CF month and Julie raised more than $1,400 in the Great Strides race for research.
“There is no cure,” she said. “Almost 60% of people with CF are over 18 now, a lot more than ever before, but that presents a whole different issue. Now we have to figure out a way to control the disease and live with it. It wasn’t that long ago people just died so much earlier and it wasn’t an issue.”
Julie said as long as her lung capacity remains in the 30% or above range, she can function.
“If it dips into the 20s I’ll get the tests which will determine if I can get a double lung transplant.”
Although her condition limits her – “I just have to go slower, and I get tired sooner” – it doesn’t define her.
“I’m more than just CF,” she said. “Life is about adjustments. I just have to make more than some other people.”
An avid photographer (she was forced to drop out of a photography course in college when the disease flared up), she is also an animal lover with two dogs, three cats and a number of African dwarf frogs that she has individually named.
“You really can tell them apart, if you look” she said, responding to the question of how you name a particular frog.
Although CF is progressive (she had to give up work three years ago), she retains most of her energy, drive and hope.
“There is a new drug, Kalydeco, which has really reduced CF symptoms” she said. “It’s not covered by government drug plans and it cost $350,000 a year.”
I’m hoping a price can be negotiated so it’s affordable. Other countries have done it.”
I used to "beat " c.f. patients while working as RRT and I can sympathize with them. Hard emotionally when it is young children. Good for you Julie
Awesome article! She's right, it's an unrecognized disease that individuals must endure daily for a lifetime! Cancer hits hard but gets a lot of attention and fundraising efforts. Cystic fibrosis can be lethal and is difficult for patients as they can't get together with one another to support each other. As well, CF patients look fine therefore are not taken as seriously when they are ill. People often do not understand the importance of staying home when they are ill as it can have a detrimental effect on these people. It's difficult when kids miss a great deal of school especially as they get older and the consequences are long term. It is difficult growing up as kids want to be normal just like everyone else. They don't want to take pills all day, haul a machine around with them so they can breathe!