LIVING WITH LUPUS | Jamie & Victoria T.

Greetings everyone, a new year begins!

As a teacher for over thirty years, I’ve given countless lessons to my students. But none compares to the one I’ve learned from my brave daughter Victoria who was diagnosed with lupus in 2021.

When we know better, we do better.

I hope you’ll share a few minutes of your time so I can explain what I mean because I’m not a fundraiser, I’m a parent. Victoria – who is a teacher in training – has taught me that education is the key to battling this chronic, life-threatening, and seriously underfunded disease that affects over 1 in 1000 Canadians, many of them young people just like her.

Victoria grew up a happy, energetic, and bright child. Outgoing, funny, and full of confidence, she excelled at school and sports. Like many kids, there were some physical ailments, like the rashes she would often get. Sore joints in her knees and elbows were also a regular complaint, but we chalked that up to being a busy student athlete.

Victoria never let things stand in her way – she took risks– like commuting over 100km each way to high school from Trenton before billeting in Toronto at just 16 to play in the fiercely competitive OSBA/AAU Canadian basketball league. She knew what she wanted, and she went for it.

During the pandemic, Victoria knew something wasn’t right.

Away on an academic and athletic scholarship at Nipissing University, Victoria called me to tell me that her joints ached, and that she couldn’t open bottles or fasten buttons. This led to a diagnosis of Rheumatoid Arthritis (RA), and she went on medication. New rashes soon followed, as did her next diagnosis: Rhupus, which is an overlap of RA and systemic lupus erythematosus. Suddenly, Victoria was on more medication and a low-dose chemotherapy drug.

She lost weight. She couldn’t keep food down. She struggled with back pain. But she kept playing on her varsity basketball team without talking much about her health, even though her coaches and teammates noticed she didn’t have the energy she once had.

A trip to the hospital in North Bay confirmed it: Victoria had lupus.

By Christmas of 2022, Victoria was in the hospital again, had lost her basketball scholarship, was on prednisone and suffering from severe swelling, could hardly sleep, had hand tremors and was constantly ill. We couldn’t be there with her to support her in person. And then things got even worse.

After that lupus flare subsided, Victoria returned to school and sports. But lupus is a rollercoaster – with a brutal learning curve – and by June, another flare sent her back home to us and into critical care in the hospital three different times. With swelling, rashes and one of the most aggressive forms of lupus they’ve ever seen, Victoria was taking expensive trial medications, undergoing regular blood transfusions, battling through chemotherapy, as well as being on dialysis three to four times a week, with eyes so swollen she could barely see.

Victoria’s doctors have explored numerous treatment avenues, such as biologics and other costly medications. Unfortunately, many of these options are not covered by government health programs, and obtaining coverage from private insurance has proven challenging, making it necessary for us to file an appeal with our insurance provider. This is despite the fact that, as parents, we have comprehensive coverage as educators.

Private insurance should not be a barrier to accessing effective and readily available treatments for lupus. Imagine the pain of not having access to medication you knew could make your child better? In spite of her suffering and pain, being away from school, sports and friends, her optimism and unwavering search for the silver lining continued.

Like the educator she is, she’s also chosen to learn more about her disease.

She knows the names of the 30+ pills she must take daily, and why. She’s learned so much about lupus on the Lupus Canada website. She applied for a Lupus Canada scholarship – and won it – to help offset the loss of her scholarship. She’s opened up to younger children with auto-immune diseases. Now she’s sharing her story so even more people can learn about lupus, and help raise funds for advocacy, awareness and ultimately, a cure. I’m so proud of her, and so grateful for the lesson she’s teaching us all despite the numerous challenges she continues to face.

When we know better, we do better.

But we can’t educate others without people like you. Remember, your donation is essential to enabling critical research, ongoing advocacy for earlier diagnosis, increased public awareness and support, raising funds for scholarships – and crucially, providing more equitable access to life-changing medication.

Through my daughter’s power of example and my faith in education, I have also spent countless hours understanding this disease and its treatments. It’s helped me accept the challenge of this ride we’re on – and welcomed people and the incredible support of people at Lupus Canada into our lives. And if you’re a parent of a child going through this, hang on tight, learn about what you can do, and ask for help.

I hope you and your family have a safe and happy holiday season. And know that Lupus Canada – and many families like mine affected by this life-threatening disease – are grateful for your generous support.