HELP US GET CLOSER TO LIFE WITHOUT LUPUS THIS HOLIDAY SEASON
As the holiday season approaches and another year draws to a close, I want to say thank you for giving to Lupus Canada. Your support not only helps people with lupus, but also their family members and caregivers who selflessly share the struggle with this mysterious disease.
Canadians of all ages, male and female, continue to be diagnosed with lupus. One brave little girl we’ve gotten to know recently is 9-year-old Amelia. Amelia has always been active and loves taekwondo and gymnastics – a typical, energetic, healthy child.
But less than 2 years ago she woke up with a swollen eye. Her mom, Karen, knew it wasn’t from sports, but thought it might be a mosquito bite. For the moment, she didn’t think much of it.
Then Amelia’s ankles swelled up. And her calves. Karen’s mother instinct kicked in: This is not right!
With the community in pandemic lockdown, visiting a doctor wasn’t an option, but Karen managed a video call with her pediatrician. He urged them to go right away to Sick Kids Hospital in Toronto, fortunately a short drive away.
Doctors there were a bit perplexed. The symptoms were limited and ambiguous. Early tests showed it could possibly be lupus. Lupus? As Karen recounts now, she and her husband Lawrence weren’t even sure what that was!
Amelia was admitted for days of additional tests that confirmed she has lupus nephritis, affecting her kidneys.
Karen and Lawrence embarked on a steep learning curve. They discovered that lupus is an auto-immune disease that causes a person’s own immune system to mistakenly attack healthy tissues – organs, bones, even the brain. It affects over 1 in every 1,000 Canadians – young and old, male and female. For a little-known disease, that’s a lot of people!
Karen admits, “I won’t pretend it’s not scary to have your child diagnosed with this disease. There is no cure.” Treatments vary in effectiveness with each person. Some patients suffer regular debilitating flare-ups.
Fortunately, Amelia was diagnosed quickly. That’s not always the case. Lupus presents differently in everyone. It is known as the disease with a thousand faces. Health care facilities in smaller towns and cities are sometimes not very familiar with the disease. Some patients suffer for years before lupus is finally diagnosed.
Karen and Lawrence have asked me to pass along a message of thanks to donors like you. They recognize that treatments for lupus are much better than they were 20 years ago, and that donors like you helped make those advances happen. However, there’s still a lot to be done.
We urgently need better ways to diagnose lupus and keep it under control, and work toward the ultimate goal of a cure.
A cocktail of medications and diet restrictions presently keep Amelia’s condition under control. She has to be monitored. Her diagnosis affects everyone around her: her parents, her older sister, her friends, her classmates, her teachers. Everyone who interacts with a lupus patient like Amelia has a responsibility to ensure that they’re protected from risks, such as infection. Covid-19 is a big worry!
“I worry about the future,” Karen says. “Will something trigger a serious flare-up? Will she always remember to take her meds?” At the same time, Karen admits that Amelia herself takes it all in stride! She was always resilient, but now even more so.
Amelia’s older sister said, “Mom, Amelia is super strong. She’s probably stronger than any of us.”
Looking back, Amelia’s parents say the pandemic lockdown had a silver lining. It meant they were always around to keep an eye on their daughter. As restrictions ease, they are carefully reintroducing Amelia to normal life. There are lots more kids and adults out there who are struggling to stay healthy despite lupus. You may recall reading about Isaac, a teenage boy with lupus we profiled in earlier letters. We have good news.
Isaac is now 18 and in first-year university. He’s doing well, thanks to the loving support he has always enjoyed from his parents and his beloved younger brother, Elias. Looking back on Isaac’s journey, Elias says, “It took a long time to diagnose him. They tried a lot of things. It would be great if more research was available to speed up diagnosis and treatment.” Isaac’s mother, Tashmina, recognizes the difference that donors can make. She says, “Donors can have such an impact because there’s so much within reach of the researchers that can make a big difference.”
Lupus is not getting the attention it deserves. Lupus Canada doesn’t receive government funding. We are a team of just 3 dedicated professionals, and we rely on donors like you. Your donations help fund Catalyst Grants, offered to kick-start innovative new projects or research ideas. We need those breakthroughs! Your support also helps Lupus Canada advocate for people with lupus and their families, and to push for more government funded lupus medications. You help provide post secondary scholarships to young people with lupus.
With your support, we hope to find better treatments and hopefully, one day, a cure.
To help us get closer to life without lupus, please give online at www.lupuscanada.org/holidayappeal2021
Best wishes to you and your family over the holidays, and thanks again.
Leanne Mielczarek, Executive Director, Lupus Canada