Patient Voice

A quiet kind of love: How ordinary yet meaningful gestures became my new version of romance

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.

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A life interrupted, a future reclaimed: Jennifer’s NMOSD story

Following years of debilitating neuromyelitis optica spectrum disorder (NMOSD) relapses, Jennifer Drolet has found stability — and hope — through proactive care and close collaboration with her neurologist.

PERSPECTIVES

Opinion: Parkinson’s doesn’t care who it impacts, but we should

After years without answers, my diagnosis revealed serious gaps in how Parkinson’s is understood, studied, and treated in women.

Latest Features

Shorts

Defying expectations: How Casey outruns (and outswims, and outcycles) dystonia

When Casey is running, biking, or swimming, her muscles are a fathomless reservoir of strength. But in daily life, dystonia turns those same muscles against her, pushing her to better understand her body, her health, and what they truly need.

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.‍

LONGFORMS

For Bowen: Fragile X diagnosis propels family into advocacy and drug discovery

A genetic autism diagnosis can shake a family’s foundation. For the Parrs, young Bowen’s Fragile X diagnosis strengthened their bond and inspired a lasting commitment to advancing research and treatments for their community.

SHORTS

Shorts

Swinging for the fences: Andrew & Sarah’s story

GASTROESOPHAGEAL CANCER & CAREGIVING

Patient Voice spoke with Sarah Murphy-Dyson and Andrew Mackay about navigating the mental, professional, and financial toll of Andrew’s cancer diagnosis—and how their relationship has grown stronger through it.

SHORTS

Shorts

“Only you get to decide where your limits are”: Catherine’s story

Anaplastic astrocytoma

Patient Voice spoke with Catherine Wreford about the profound mindset shift that followed her rare brain cancer diagnosis.

SHORTS

Shorts

Learning to live with epilepsy—one night at a time: Hannah’s story

Nocturnal epilepsy

Patient Voice spoke with Hannah Newport about living with nocturnal epilepsy, and how love helped her move beyond anxiety and fear.

SHORTS

Shorts

When “almost okay” wasn’t enough: Hannah’s face-off with PNH and motherhood

During her fertility journey, Hannah was diagnosed with paroxysmal nocturnal hemoglobinuria, a rare blood disorder that reshaped her path into motherhood and made every day a battle against fatigue.

SHORTS

Shorts

From researcher to patient to advocate: Alanna’s story

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.