Living and giving with Lupus


By Lucy-Claire Saunders



From the back office of his Westview Esso station in North Vancouver, Karim Chandani has been working overtime. Buried under a stack of papers and several computers, Chandani has raised a whopping $2.8 million in just four months for kids with lupus.


After his daughter Jalisa was diagnosed with lupus, an autoimmune disease that can be fatal, Chandani says he was shocked to learn just how many children and teens are affected by the disease, as well as rheumatoid arthritis, another autoimmune disease with no known cure.


He says 100 per cent of the money raised will establish a chair in pediatric rheumatology at B.C.’s Children Hospital.


"It started out being about my daughter but it very quickly changed when I found out about the amount of kids who are affected," said Chandani, who was recently nominated for the 2008 Hope Leadership Prize.


"So little is known about the disease and yet so many kids are affected."


Chandani says there are about 5,000 children with lupus and arthritis in B.C. alone. Lupus can occur at any age, and is most common in women, particularly in the Asian and South Indian Communities.


"Statistically women and minorities are the most affected," said Chandani.


Sharon Chung, a University of California, San Francisco rheumatologist, recently told Audrey Magazine that Asians have been found to have more aggressive cases of lupus.


Extremely low awareness levels among Asian Canadians coupled with a community stigma surrounding chronic illness means that the disease is being forced underground, isolating patients and delaying diagnosis.


With no known causes or cures, the enigmatic disease attacks healthy tissues, resulting in redness or swelling, pain and organ damage. It affects each person differently and can be very mild or excruciatingly severe, sometimes causing heart and kidney disease.


Chandani’s daughter has been living with lupus for about a year. Although she is coping extremely well, the drugs given to her have altered her appearance, says Chandani, which can be especially hard on a little girl.


As there are no research initiatives in Canada for children with lupus, Chandani and his wife Shala have decided to create one. It wasn’t long before a charity was born - Celebs For Kids.


Chandani’s goal is to raise $3.5 million to establish the Ross Petty Research Chair, named after the doctor who heads the rheumatology department at B.C.’s Children’s Hospital. With just $700,000 to go, Chandani is closer than ever.


This August, Celebs For Kids will host two celebrity fundraising events, a golf tournament and a night of entertainment at the River Rock Casino, hosted by Edmonton Oiler legend Grant Fuhr.


"We have three levels at the River Rock where 700 guests can mix and mingle with tons of celebrities," said Chandani. "We have spent no money. Everything has been sponsored or donated and it’s been absolutely amazing."


To celebrate the launch of his charity, this Friday Chandani will be hosting a party at the Sutton Place Hotel.


For more information about the charity and upcoming events, visit: www.celebsforkids.ca.

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