Authentic friendships, both in-person and online, became a lifeline for me. They offered strength and allyship when I needed them most.
A rare disease diagnosis can make planning for the future especially challenging. Yet, thanks to ongoing research and medical innovation, Fabry patients across Canada — like Lila and Brendan — have much to be optimistic about.
While cutaneous T-cell lymphomas are extremely rare, they’re also easily misdiagnosed. If you’re experiencing unexplained skin-related symptoms, knowing what to look for and which tests to request can help expedite diagnosis.
HIV & EXERCISE BULIMIA
Patient Voice spoke with Justin Anantawan about navigating life and love after his HIV diagnosis.
Learning how to speak up and advocate for oneself can greatly impact patients’ care and health outcomes.
Bardet-Biedl syndrome (BBS) has touched nearly every aspect of Natasha Rivard’s young life. Now, as she enters adulthood, her mother, Annie, is pausing to reflect on just how far she’s come.
LYMPHOMA
Patient Voice spoke with Charlene Charles about a delayed lymphoma diagnosis that worsened her mental health, and how she found connection, peace, and the strength to move forward.
Cholangiocarcinoma
Patient Voice spoke with Terry May about fundraising for cholangiocarcinoma, coming to terms with his own illness, and focusing on being the best dad he can be.
Morquio syndrome (MPS IVA)
Patient Voice spoke with nine-year-old Simon Hoskins and his mother, Becs, about Simon’s journey with Morquio syndrome, the challenges he faces, and how he continues to remain positive and resilient in the face of a rare disease.
COVID-19
When Jana Ray contracted COVID-19 in early 2023, the virus almost put her in the hospital. Later that year, when she tested positive again, she and her husband, Ivan, had a plan.
Breast Cancer
Patient Voice spoke with Seana Shallow about being diagnosed with triple-negative breast cancer the day before she turned 27, and how it has pushed her to redefine her vision of the future.
Patient Voice is an independent, Canadian-owned digital publisher and online community devoted to elevating the voices of patients, caregivers and clinicians as a means of effecting meaningful and positive change.
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