Living with Lupus: Micah’s Story
From Varsity Basketball to Pioneering New Lupus Treatments
Let’s Talk Lupus: Conversations with Macenzie — Real stories from Canadians living with lupus.
Micah, university student and researcher sharing her experience living with lupus in Canada
In the summer of 2020, 17-year-old Micah picked up what she thought was a nasty stomach bug. But as more time passed, Micah’s ‘stomach bug’ didn’t go away—within a month, she had lost around 40 pounds.
“But all of a sudden, I developed arthritis symptoms in my joints,” she says.
Unfamiliar with autoimmune conditions, Micah’s family doctor referred her to a rheumatologist for further evaluation.
Soon after, she was diagnosed with arthritis and celiac disease and began treatment, but nothing seemed to fully relieve her symptoms.
Holding On to a Dream
Despite everything happening with her health, Micah remained laser-focused on her varsity basketball scholarship at Western University.
“I really wasn’t even thinking about it. I wanted it to be a side piece of my life,” she explains. “I already signed my contract, and that was Plan A. There was no straying from Plan A.”
Things escalated quickly for Micah. As her health worsened, she began losing her mobility—the very thing her future depended on.
Some days, she couldn’t even walk up the stairs, let alone play basketball. She thought to herself, ‘How am I going to go to practice and tell my coach I can’t play again today?’
“It was a scary time. I was learning how to navigate the world as a disabled person while also entering adulthood. It was a tough combination.”
Letting Go of Basketball
Determined to be well enough to continue her basketball career in university, Micah pushed forward as best she could—graduating from high school and pursuing a degree in chemistry at Western University with her scholarship.
On a good day, she could still keep up with her team. She kept telling herself and her coach, “Just give it six more months.”
But after two years of being on the team and attending every game and practice, Micah reached a point where she could no longer stand on her own. She felt like she was letting both herself and her teammates down.
“My doctors told me I had to stop, and it was dangerous. So I had to let the dream go.”
Years Without Answers
By her third year of university, her health reached a crescendo when she had to stop taking her arthritis medication for eight months. Her symptoms came crashing back all at once.
This is when she started to take pictures and videos of her flare-ups to show her rheumatologist as evidence for her condition.
“She immediately wrote me a prescription for prednisone,” she explains. “I didn’t realize taking pictures was something I could do to help myself out. It’s frustrating because I could have been diagnosed sooner.”
After four long years of being misdiagnosed, Micah was officially diagnosed with Refractory Systemic Lupus Erythematosus (lupus).
Redefining Her Future
With basketball no longer a viable career path, Micah began to reimagine what her future might look like and eventually accepted the new direction her life was taking.
She shifted her focus to drug design and delivery systems, driven by her experience with lupus and complex medication regimes.
“Being involved in research that could improve treatment for people with chronic illness felt empowering,” she says. “It was something I could still contribute to, even when my own health felt out of my control.”
Looking back now, Micah feels she should have allowed herself more grace and time to recover, as she spent the majority of her final year incredibly sick. Regardless, she still completed her Honours Specialization in Chemistry with Distinction.
Navigating Complex Lupus
Now at 23, Micah’s lupus remains very active and unpredictable.
After going back and forth and trying nearly every treatment option, including the full range of available biologics, she was told there were no more new options available to her in Canada.
Earlier this year, Micah’s stem cells were harvested and sent to Case Western Reserve University in Cleveland, Ohio, for genetic modification as part of emerging BAFF CAR-T cell therapy.
She is the first Canadian and the second person in the world to access this kind of treatment for lupus.
Advocacy and Impact
That’s why, in February, Micah partnered with Lupus Canada to launch My Hair, Your Heart, a campaign to raise funds for lupus research and shine a light on gaps in access to care.
“For me, it was straightforward: hair grows back, but access to treatment isn’t guaranteed,” she says.
So far, Micah and the community have raised over $5,000 towards lupus research.
“The campaign is about awareness, research, and ensuring that more Canadians have options when standard treatments fail.”
Support Micah’s Fundraiser
Micah is currently raising funds for lupus research through her My Hair, Your Heart campaign.
After exhausting treatment options in Canada, Micah is participating in an innovative clinical trial in the United States, offering hope not only for her, but for others living with lupus.
This fundraiser supports critical research and helps advocate for better access to emerging treatments in Canada.
Let’s Talk Lupus: Conversations with Macenzie
Each month, Let’s Talk Lupus: Conversations with Macenzie brings you inspiring stories from Canadians living with lupus. Through these interviews, Macenzie, a Toronto-based journalist and writer diagnosed with Systemic Lupus Erythematosus (SLE) in 2017, shines a light on the experiences, challenges, and triumphs of those navigating life with lupus.
If you’d like to share your story, please email ariana.ranjbar@lupuscanada.org.
