SUPPORT THOSE LIVING WITH LUPUS THIS HOLIDAY SEASON
Dear Friend of Lupus Canada,
Thank you for supporting Lupus Canada and helping families affected by lupus. I wish you and your family good health over the coming holidays, especially if you or someone you love suffers from this terrible, mysterious disease.
As I’m sure you’re aware, lupus affects not only the person who has the disease, but the parents, siblings, relatives, friends and partners who alter their daily lives to provide vital support.
One young man who was kind enough to let me share his story is Vikas. Lupus recently took from him the beautiful young woman he planned to marry. “I don’t really tell this story a lot,” Vikas says. “It was the hardest thing I’ve ever had to deal with.” Like so many people, the young couple were not familiar with lupus. “It started when Beatrice got this butterfly rash on her face and we didn’t know what it was.” Vikas had to learn fast, as the disease flared and affected Beatrice’s kidneys.
“They tried different treatments and she had bad reactions. She was in hospital for weeks or months at a time. Although we always remained hopeful – small victories were eventually met with further complexities.”
In retrospect Vikas says, “I would like to see more hope, you know? More money going into research for more treatments.” That’s one reason Vikas volunteered to join the Lupus Canada Board of Directors. And why he asks for your help.
With your gift today we can fund more research into new treatments. “Life without lupus is what Lupus Canada is all about”, says Vikas. “We get there through the work of very capable scientists and researchers, but it’s up to us to give them the resources they need.”
That message is seconded by Tashmina, the mother of Isaac, a teenage boy with lupus who we profiled last year. “Donors can have such an impact because there’s so much within reach of the researchers that can make a big difference.” Isaac is now 17 and doing well, thanks in no small part to the dedicated support of his little brother, Elias, aged 13. “He’s my brother. Anything he needs, I will do it for him,” Elias says. His mother adds, “It was Elias who got his brother through the tough days. Elias has been such a support in a way that a parent or a doctor could not be.” She recalls the night she got up to check on Elias and discovered he’d been quietly sneaking into Isaac’s room to sleep at the foot of his brother’s bed.
“It took a long time to diagnose Isaac,” Elias recalls. “They tried alot of things to treat him. It would be great if more research was available to speed up diagnosis and treatment!” Lupus Canada funds grants to researchers so that more lupus patients can find the treatments that are right for them. We can’t do it without you.
The call for more support for caregivers, and more treatments for lupus patients is echoed by Heather, whose husband Kerry has lived with lupus for 50 years. “With lupus, you’re all in. You have to be,” she says. “You have to be the morale booster. Lupus has put Kerry in the hospital more times than I can remember.” He’s undergone several drug treatments, from prednisone to methotrexate and others, but they all have side-effects. “As a caregiver, it’s hard to keep track. Like, is this being caused by Kerry’s lupus? Or is it a side-effect of the drug?”
A relatively new drug called Benlysta is helping Kerry. “It’s expensive,” Heather points out, “but luckily our employer benefits cover it. I know that’s not the case for everyone, and that affects the treatments people have access to.”
Lupus Canada’s advocacy campaigns strive to work with politicians and governments to enhance policies and legislation affecting people living with lupus. Please support these efforts by donating today.
Says Heather, “Donors can have impact that goes way beyond what they think. It will impact the ability of families and caregivers to access treatments and other critical supports.” More types of treatment are necessary because lupus is a disease with a thousand faces, affecting everyone differently. Thankfully, Kerry is in good health today, helped by Heather’s support and his own knowledge of his disease.
Isaac is doing well. He’ll soon finish high school and plans to study aerospace engineering in university. “There’ll be tears when he leaves,” says his brother Elias, “but I’ll be smiling because I always knew he would make it.”
Sadly, Beatrice passed away in hospital in 2019. “She always said, I’m not going to let this define how I live my life,” Vikas says, choking up. “If there is life without lupus in my lifetime, I’ll be the happiest guy in the world.”
As we persevere through this unprecedented pandemic, we need your help now more than ever so that we can continue to support Canadians living with lupus, like Kerry and Isaac. And help prevent the tragic loss of people like Beatrice to this cruel disease. Help us get closer to life without lupus.
To support those like Kerry and Isaac please click here www.lupuscanada.org/directmail/ to make your donation.
Caregivers are the unsung heroes in the battle with lupus, and I’m often humbled by their stories of courage and resilience. With your help, the new year gives hope for improved treatments and a better outlook for Canadians living with lupus.
On behalf of Vikas, Elias, Heather and the more than 1 in 1,000 Canadians living with lupus, thank you and best wishes for happy holidays and a new year of good health.
Executive Director, Lupus Canada