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.
Nocturnal epilepsy has changed how I think about love. Instead of sweeping romantic gestures, I’ve come to appreciate love that shows up as quiet, steady acts of care.
Autoimmune encephalitis
Patient Voice spoke with Alanna Yee about the sudden illness that interrupted her career in medical laboratory science and set her on a journey to find answers and treatment—and reclaim her cognitive health.
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.
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.
HLH & Grief
Patient Voice spoke with Tayler DeLisio about her late husband Wes’s difficult diagnosis—and how she and their daughter, Aubrey, are navigating life after his passing.
NF1 & Thalassemia
Patient Voice sat down with Tasha Kavanagh about facing a rare disease diagnostic journey not once, but twice.
HIV & EXERCISE BULIMIA
Patient Voice spoke with Justin Anantawan about navigating life and love after his HIV diagnosis.
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.
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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