Living with lupus

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Individuals sharing the diagnosis are issuing a call to action today
Erin McPhee, North Shore News
Published: Sunday, June 22, 2008

Lupus is commonly referred to as "the disease with a thousand faces."

The following are the stories behind two of those.

The first is a longtime North Shore doctor, Jan McCaffrey, who's bravely stepping into the spotlight to tell her story as a means of raising awareness of the disease so change can be enacted now, diagnoses can happen earlier, treatment options can be expanded and a cure can be found.

As well, she's working to help create a network of those sharing her diagnosis as "there's strength in numbers," she says.

The second is Jalisa Chandani, a nine-year-old North Vancouver girl whose father Karim, motivated by his love for her, has taken it upon himself to raise the profile of the disease so no child has to feel pain.

Karim is also working to raise the funds required to set up a B.C.-based research chair in paediatric rheumatology.

Dr. Jan McCaffrey

"If I had to write a bumper sticker for doctors and lupus with a view of helping diagnose patients sooner, I would say, 'If it doesn't make sense, think of lupus,'" says Dr. Jan McCaffrey, a 57-year-old family doctor who practised on the North Shore and, along with her family, calls Ambleside home.

McCaffrey's story is similar to many of those with lupus. Having been well all her life, two years ago out of nowhere she was knocked off her feet and over the course of five days gained 50 pounds and went into kidney failure. There had been indicators prior to her falling ill; however, they had been difficult to piece together, she says.

"It made me realize just how difficult it is to make the diagnosis," she says.

Lupus patients can be afflicted with any of a number of potential symptoms, ranging from mild to severe, that are not specific to the disease and each individual's experience is different.

The most common form of the disease, systemic lupus erythematosus, is a chronic, inflammatory autoimmune disorder that causes the body's immune system to attack its own healthy tissues and organs.

According to McCaffrey, lupus primarily affects women, with 15 per cent of cases occurring in children and 10 per cent in men. It's estimated that there are anywhere from 15,000 to 50,000 Canadians affected by the disease, however that's believed to be under reported.

"We don't have good numbers, it's a problem," she says.

Being diagnosed with lupus has completely altered the course of McCaffrey's life. A dedicated doctor and community and health activist she often burnt the candle at both ends, propelled forward by a strong work ethic and a passion for serving her patients and the wider community.

Due to the unpredictability of her lupus and the side effects related to her treatment, she was recently forced to cease working at her practice and has had to drastically cut back on her other roles and volunteerism as the littlest bit of stress can negatively impact her health.

"My disease is still relatively new and it's a shifting landscape," she says.

However, she's still fueled by a desire to help and heal others, and she's found herself in a unique position.

Having treated lupus patients as well as experienced it firsthand, she's taken an advising role with the B.C. Lupus Society.

McCaffrey says lupus differs from other more known diseases where research and public awareness are helping to make a difference.

"It's very hard to understand and study a disease that's going to present differently in every single person," she says.

While research has been conducted that tells us more, it hasn't impacted patients' knowledge of what to ask about or doctors' ability to diagnose the disease.

McCaffrey is therefore working to change that, doing her best to educate patients about some of the symptoms of lupus, which include pleurisy or pericarditis, oral ulcers, arthritis, sun sensitivity, blood abnormalities, kidney issues, seizures or psychosis, or a rash on the face or body. Other symptoms not used for diagnosis that signal red flags include fatigue, aches, fingers or toes that go blue and hair loss.

A further challenge with the diagnosis of lupus is that the main test for the disease, ANA test, shows a false negative in one per cent of patients, says McCaffrey, herself included. An ANA test can be positive in other illnesses so a positive result should prompt other more specific tests for lupus, she says.

"My blood tests were negative, I had no indication I had lupus so everybody was scratching their head," she says, adding that she was eventually diagnosed through a kidney biopsy.

"In spite of the imperfection of the test, it is the test to start with," she says.

McCaffrey also hopes doctors become more aware of the warning signs of lupus.

"Believe me, doctors have a terrible time," she says. "They feel awful saying 'I don't know what it is.' They're trained to tell you what it is so when they have to say, 'I'm sorry I don' know' it's a real disappointment."

McCaffrey also hopes treatment options for patients improve.

"The only thing they've been able to do is squash the immune response, they haven't been able to find anything else," she says. Treatment options include chemotherapy (immunosuppressants) and high-dose steroids.

"That's all we've got," she says, adding that nothing significantly new has emerged in 30 years. Although there are always new drugs on the horizon that look promising, a cure has yet to be found.

The problem with these types of treatment is that for example, while cancer patients undergo chemotherapy for a period of time then enter remission, lupus patients, if their lupus won't behave, could face a lifetime of the treatment, further impacting their health.

To encourage positive change on these fronts, representatives of the B.C. Lupus Society are looking to increase its membership as well as create a provincial registry of lupus patients through a new lupus clinic at St. Paul's Hospital.

"There is strength in numbers," says McCaffrey. "We cannot compel people to fund research or support (us) if we don't know how many there are of us."

She also encourages community members to attend the society's annual patient symposium, this year's is being held in New Westminster in the fall. International experts will attend to talk to patients about their illness and what kind of support is available. Finally, Vancouver will host the 2010 World Lupus Congress timed with annual World Lupus Day in May of that year.

When asked where her motivation comes from, McCaffrey, who's lost friends to lupus, says "Frankly, I'm a bit afraid for myself."

However, she feels by being active, despite the challenges she faces as a result of her illness, and being a spokeswoman, she can make a difference in other's lives.

"I'm blessed, I've had a really good life," she says. "If this is my fate, so be it. I think about children who've been diagnosed."

"You're never not a doctor once you've been a doctor. I think the way in which I can help and do good things is just work in a different way," she adds.

For more information on the B.C. Lupus Society, visit www.bclupus.org. To contact the lupus clinic at St. Paul's Hospital to register, call 604-682-2344.


Jalisa Chandani

North Vancouver resident Karim Chandani was in Anaheim, Calif., drinking champagne out of the Stanley Cup, when he got the call all parents dread.

His daughter Jalisa, then eight, was sick -- really sick.

It all started with what looked like a bug bite. Three days later, the rash had spread, taking over half her leg and was incredibly itchy. Her mother Shala rushed her to the doctor for tests. Another three days later, B.C. Children's Hospital called, saying they needed to see her immediately. To further complicate matters, they were involved in a fender bender on the way.

"It was just one gong show after another," says Karim.

Over the next two months, Jalisa underwent further testing that proved to be inconclusive, before finally, her parents flew her to Toronto, Ont., to meet with a doctor who determined that she had lupus.

"We're so lucky," he says, referring to the speed of her diagnosis.

Jalisa began treatment, which proved to be incredibly painful for her.

In talking to the doctors, Karim and Shala realized the lack of lupus research facilities in Canada.

"My wife looked at me and said, 'This is why your daughter got sick,'" he says. "'You're one of the people in this world who can make a difference.'"

From there, Karim has embarked on a mission to do just that. Partnered with the Arthritis Society, B.C. and Yukon division, and the B.C. Lupus Society, he's founded Celebs for Kids and is dedicated to raising $3.5 million to establish the Ross Petty Research Chair in Paediatric Rheumatology (along with the Arthritis Society and the University of British Columbia), at B.C. Children's Hospital.

A year later, he's well on his way to meeting that goal and hopes to reach it by the end of 2008.

"I'm so motivated by this to make things happen and change things very quickly," he says.

Karim hopes to heighten the profile of lupus to that of other diseases and so has attracted more than 60 celebrities, including Matt Damon, Grant Fuhr, Cheech Marin, Vince Coleman and Nancy Cartwright, who've donated their time to making a difference at three local events held August 14-15 in the Lower Mainland.

The angle that we're pursuing is through the celebrities, (we're) creating visibility," he says.

The events include live entertainment, a fashion show and a funny money poker game at the Sutton Place Hotel Aug. 14. A golf tournament will be held Aug. 15 at Mayfair Lakes Golf and Country Club with prizes per hole ranging from $20,000 to $375,000. To cap everything off, they've planned a dinner cruise and gala event at the River Rock Casino Resort later that evening. Tickets are still available.

This has all been made possible through Karim's extensive network of generous friends.

The owner of two Esso gas stations and convenience stores in North Vancouver, the Lonsdale and Westview locations, he's come to know various NHLers like Todd Bertuzzi and Brendan Morrison who'd often stop in.

"Through those people, I've met so many more people," he says.

"You're lucky enough to have those relationships and they come through for you," he adds.

Karim says he's incredibly grateful for the outpouring of support received for Celebs for Kids. The assistance from sports, entertainment and poker celebrities and industry insiders, as well as corporate sponsorship has been overwhelming.

Many municipalities as well as the province, have issued proclamations in support of their efforts.

In addition, he's been touched by the support at the grassroots level, including Deep Cove resident Christian Jarvis' son Jordan, 8, who attends Saint Pius X elementary.

Throughout the school year Jordan and his classmates were challenged to raise funds for a local cause. Jordan chose Celebs for Kids in support of Jalisa and subsequently raised $200.

For Jalisa, who attends Mulgrave, lupus is an everyday part of her life. Her ailments differ daily; however, she's one happy little girl and is hopeful for the future.

"She was in a lot of pain before and she said, 'As you're raising more money dad, a lot of my pain is going away,'" says Karim.

For more information on Celebs for Kids, to purchase tickets, to volunteer, or to make a donation, visit www.celebsforkids.ca

© North Shore News 2008