The Surrey teen was busy Thursday hosting an awareness event at Sullivan Heights Secondary, from which she’ll graduate this spring.
As music pumped in the school lobby, homemade cookies were sold by donation, games of Plinko were played, prizes handed out and information distributed about the disease, in which the body’s immune system attacks its own tissues and organs.
In planning the mid-morning event, Emma had some help from friends and also teacher Najinder Gill, who has struggled with the chronic pain of lupus for close to two decades.
“Emma was in my biology class last semester and she started talking about what happened to her with lupus,” Gill recalled, “and I’m the one who shared with her that I also have lupus. So, right away we had something in common, and I think through that we have a better understanding of what we’re going through.”
In 2015, Emma was a ballerina who aspired to dance professionally once day. That spring, she returned home from a family vacation in Hawaii and felt really lethargic – kind of like she had a case of the flu. When random rashes started to appear on her body and the fevers got worse, blood tests were done, and the news wasn’t good. It was lupus.
Making matters much worse just a few weeks later, Emma suffered a stroke — something rare in a teenager but apparently quite common in someone with lupus. The left side of her was paralyzed, leading to rehab that continues to this day.
“I’m actually feeling quite good, generally, so other than the usual fatigue that comes with autoimmune disorder, I’m doing really well,” Emma said with a smile. “My arm is still slowly trying to get back to normal, but we pretty much say that it won’t, unless there’s some kind of medical miracle.”
Emma was featured in the Now in December 2015, in a story about how she was determined to dance again one day.
The dream came true last year, during Panorama School of Dance’s year-end recital.
“That was my school,” Emma noted, “and one of my dance teachers I’m close with worked with me for a year on strength and bar exercises, and we created a piece that I performed here (at Bell Performing Arts Centre, at Sullivan Heights Secondary). The minute I walked on stage I could feel myself getting ready to cry, and then at the end, everybody in the audience was crying as I walked off the stage. It was an amazing feeling, after having all the doctors say, you know, you’re not going to walk again, let alone dance, and I was able to do that.”
Gill said she has a milder form of lupus, which can target any tissue or organ, and affects close to 50,000 Canadians, mostly women.
In those with the disease, the immune system over-activates and misfires, leading to possible organ failure and death. There is no cure for lupus, and diagnosis is difficult, according to the BC Lupus Society.
“Looking at me,” Gill said, “you’d probably never guess that I have lupus, but it’s chronic pain for me every single day. It’s something I’ve been dealing with more a long time – 20 years, since I began teaching. They didn’t diagnose it until I had my second child. They just kept classifying it as an autoimmune condition.”
As a Grade 12 student, Emma is excited to graduate soon.
“Next year I’m hoping to go to Kwantlen to study psychology and then if all goes well, I would like to transfer to VIU, which is on the Island, and do their social-work bachelor program, so I can go back into the hospital and give back,” she explained.
In hosting the awareness event at her school, Emma had hoped to attract the attention of singer/actor Selena Gomez, who was diagnosed with lupus a few years ago and talks about the disease on social media.
“We hoped she could come. Why not try, right?” Emma said with a laugh.
The coins and notes donated at the event by students and teachers will be given to BC Lupus Society (bclupus.org).
“In 2015, they were the ones who awarded me with an inspiration award, and ever since then I’ve been taking part in all of their events to bring awareness to lupus,” Emma added.