PERSPECTIVES

Friendship as medicine: How building true connections became my healing

Authentic friendships, both in-person and online, became a lifeline for me. They offered strength and allyship when I needed them most.‍

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LONGFORMS

“Nobody but my daughter will decide what she’s capable of”: Natasha’s BBS story

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.

PERSPECTIVES

Understanding CTCL: The blood cancer that appears on the skin

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.

Latest Features

Shorts

Creating meaningful change in disability and rare disease: Simon and Becs’ story

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.

Perspectives

Medical gaslighting: How to recognize the signs and take action

Learning how to speak up and advocate for oneself can greatly impact patients’ care and health outcomes.

LONGFORMS

“Why not me?”: Many SMA patients left without access to disease-modifying medicines due to age, geography

New therapies have been shown to potentially slow the progression of spinal muscular atrophy (SMA) — so why are many adult patients unable to access them?

SHORTS

Shorts

Teaming up to take on COVID-19: Jana and Ivan’s story

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.

SHORTS

Shorts

Reclaiming her identity in the wake of breast cancer: Seana’s story

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.

SHORTS

Shorts

The power of sport to heal and transform: Nasif’s story

Proximal femoral focal deficiency

Patient Voice spoke with Nasif Chowdhury about growing up with a limb difference, and his path to representing Canada in wheelchair basketball.

SHORTS

Shorts

Forged in fire: Zac’s story

Juvenile Idiopathic Arthritis / MAS

Patient Voice spoke with gym owner and powerlifter Zac Spinosa about the experience that turned his life upside down, and the roles movement and community have played in his recovery.

SHORTS

Shorts

Choosing kindness in a world that doesn’t always give it back: Jeff and Michelle’s story

Undiagnosed genetic condition

Patient Voice spoke with Jeff Norgren and Michelle Hooey about how their youngest daughter Goldie has changed their lives for the better, and why they’ve chosen to share their rare disease journey with the world.

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