Shorts

Shorts

Bernadette and Kelten's story

Complex undiagnosed disease

Patient Voice spoke with Bernadette Duffy about her son Kelten, his complex diagnostic journey, and his optimistic attitude despite everything he faced. 

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Lucy's story

Takayasu’s arteritis

Patient Voice spoke with Lucy De Matos about her struggle to receive an accurate diagnosis for her rare disease and her main reason for staying strong throughout it all. 

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Logan’s story

Childhood cancer

Patient Voice spoke with Logan Petersiel about their childhood cancer diagnosis and how powerful it’s been to rediscover themself as an advocate on their own terms.

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Cassie’s story

Epilepsy + Alopecia

Patient Voice spoke with Cassie Johnston about how her epilepsy and alopecia journeys have inspired her to support others going through similar experiences.

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Ken’s story

Parkinson’s disease

Living with Parkinson’s disease has been challenging for Ken Jenkins but with the support of his family and a treatment plan that’s right for him, he’s found a renewed sense of hope and the ability to enjoy his retirement with his loved ones.

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Joel’s story

Myxoid liposarcoma

Patient Voice spoke to Joel Cuthbert about how his rare cancer journey has inspired him to support others going through similar experiences.

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Sabrina’s story

Lung cancer and Grief

Patient Voice sat down with Sabrina Szabo on the third anniversary of her father Philip’s passing to explore the complex emotions associated with grief.

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Christine White

Gaucher disease

Learn about how Christine’s daughters Kate and Meghan inspired her to join the fight for access to treatments for Gaucher disease.

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Jonathan Pratt

Rare disease

Learn about how a heartbreaking encounter with a rare disease family inspired Jonathan to devote his career to Canada’s 1 in 12.

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Biba Tinga

Sickle cell disease

Learn about how Biba’s son Ismäel’s sickle cell journey inspired her to want to effect systemic change for an entire community.

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Beneath the skin: Tom’s unexpected diagnosis

Cutaneous T-cell lymphoma

When Tom Butler began experiencing a persistent rash, the last thing on anyone’s mind was a rare form of blood cancer called cutaneous T-cell lymphoma. Fortunately, Tom’s determination to get to the bottom of what was causing his symptoms led him to a keen-eyed dermatologist and a path forward.

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Lisa’s story

Essential thrombocythemia (ET)

Patient Voice spoke with Lisa Taylor to learn about the urgent drug shortage facing Canada’s essential trombocythemia (ET) community.

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Daniel’s story

Rare autoinflammatory disease

Patient Voice sat down with Daniel Kinchlea, a passionate young rare disease advocate and published children’s book author.

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Caitlin’s story

Parkinson’s disease

Patient Voice sat down with Caitlin Nagy to discuss how she’s working to change the narrative for women living with Parkinson’s disease.

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Robby’s story

Breast cancer

Patient Voice spoke to Robby Spring about her breast cancer diagnosis, and why she’s chosen to share her hair regrowth journey so openly.

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Misshka’s story

Chronic myeloid leukemia

Patient Voice spoke to Misshka Gupta about the experience of being diagnosed with leukemia as a young adult, and how she’s learned to coexist with cancer.

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Steff’s story

Ankylosing spondylitis

Patient Voice ambassador Steff Di Pardo shares her journey of coping with an ankylosing spondylitis diagnosis and how her advocacy provides comfort and support to others with disabilities.

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Nick’s story

Grief and traumatic injury

Patient Voice spoke with Nick Veloce about his twin griefs over the loss of his wife and, due to a horrible accident shortly after, his mobility.

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Megan’s story

Crohn’s disease

Patient Voice spoke with Megan Marsiglio about how sharing her experiences with Crohn’s disease has shaped virtually every aspect of her life.

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Ed’s story

Kidney cancer

Patient Voice spoke with Ed Faddies about how he copes with the fear and confusion that can come hand-in-hand with a kidney cancer diagnosis.

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Brad’s story

Traumatic spinal cord injury

Patient Voice spoke with Brad Arseneau about the traumatic injury that changed his life and how he’s navigated the long road back to being able to enjoy his passion — skateboarding.

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Balancing new motherhood and a rare cancer diagnosis

Diffuse large B-cell non-Hodgkin lymphoma

In late 2020, when Paula Hall should’ve been basking in the newness of motherhood, she was instead thrust into intensive treatment for a rare blood cancer.

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A lesson in advocacy: Linda’s fight for health equality

Rheumatoid Arthritis

Linda Roy has spent the majority of her life immunocompromised. Now, from her home in a remote New Brunswick community, she’s turned her experience into a passion for helping others.

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Life after transplant: Afsana’s journey with a rare liver disease

Primary Sclerosing Cholangitis

At just 16 years old, Afsana Lallani was diagnosed with a rare liver disease. Only a few short years later, she found herself in urgent need of a life-saving organ transplant.

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Tina’s story

Breast cancer

Patient Voice spoke with Tina Martel about the realities of cancer and her work to reimagine the constructs of femininity through fashion and art.

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Jessica’s story

Preterm premature rupture of membranes (PPROM)

Patient Voice spoke with Jessica Cohn about the premature birth of her son Ari and the need for increased support and awareness around women’s health.

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Peter’s story

Testicular cancer

Patient Voice spoke to Peter Bovolaneas about his testicular cancer diagnosis, the healing power of laughter, and his passion for erasing stigma around male openness and vulnerability.

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Kae’s story

Limb-girdle muscular dystrophy

Patient Voice spoke with Kae Tran about learning to accept her muscular dystrophy diagnosis and how she’s working to represent the disabled community online.

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Shirley’s story

Menopause

Patient Voice spoke with advocate Shirley Weir about menopause and the importance of expanding our education to help reshape the conversation into something genuinely helpful.

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Emma’s story

Type 1 Diabetes

Patient Voice spoke with Emma Perry about the difficulties of being diagnosed with type 1 diabetes as a young adult in Canada.

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Chantale’s story

Appendix cancer

Patient Voice spoke with Chantale Thurston about her journey in discovering she had appendix cancer and the need for more compassion in cancer care.

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Mike’s story

Ramsay Hunt syndrome

Patient Voice spoke with Mike Shoreman about how a rare diagnosis deeply impacted his mental health, and why storytelling has played a indispensable role in his ongoing recovery.

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Amanda and Kimberly’s story

tuberous sclerosis complex

Patient Voice spoke with Amanda Cecconi about her sister Kimberly’s tuberous sclerosis complex diagnosis, the balance of sisterhood and caregiving, and her family’s advocacy journey.

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Unstoppable: Sarah’s journey from coma to altar and beyond

Granulomatosis with polyangiitis (GPA)

Sarah Kempinska’s rare form of severe ANCA vasculitis saw her in a medically induced coma just days before her wedding. As the one-year anniversary of her marriage approaches, Sarah is thriving, but the struggle of living with the disease remains.

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Jamie’s story

Pre-skin cancer

Patient Voice spoke with Canadian sports broadcaster Jamie Campbell about his experience with pre-skin cancer and why he’s passionate about increasing conversation around sun safety.

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Thriving on and off the ice as a teenager living with a rare condition

Neurofibromatosis type 1 (NF1)

Nathan Turgeon, a 16-year-old from rural Quebec, is living with a rare genetic condition called neurofibromatosis type 1. But this ambitious, hockey-loving teenager won’t let anything hold him back from achieving his goals.

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Michelle’s story

Erythropoietic protoporphyria (EPP)

Patient Voice spoke with Michelle Capon about the immense mental and physical impact that porphyria can have on those who live with the rare condition.

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Alice’s story

Wilson's disease

Patient Voice spoke with Alice Williams about Wilson’s disease, the rare genetic condition that’s turned her family’s lives upside down over the past year.

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Harjeet’s story

Subcutaneous panniculitis-like T-cell lymphoma (SPTCL)

Patient Voice spoke to Harjeet Kaur to learn about her rare lymphoma journey, and to better understand the importance of representation and diversity in cancer advocacy.

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Josie & Cole’s story

Sotos Syndrome

Josie Dye is one of Patient Voice’s 2024 “Rare Creators” — someone who is using their online platform to uplift the Canadian rare disease community. Josie is a radio host, TV personality, and rare disease mom who harnesses her platform to support other parents through the highs and lows of raising a child with a rare disease.

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The strength of positivity: Sarah and the ‘butterfly’ condition

Epidermolysis Bullosa (EB)

Sarah Sweeney shares her journey to accepting life with a rare skin disorder defined by fragile skin and constant wounds.

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Why knowledge is power following an NMOSD diagnosis

Neuromyelitis Optica Spectrum Disorder (NMOSD)

Lelainia Lloyd reflects on a long and accomplished career as a chronic illness and disability advocate.

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Mara’s story

Retinitis Pigmentosa (RP) + Usher Syndrome

Mara Hutchinson is one of Patient Voice’s 2024 “Rare Creators” — someone who is using their online platform to uplift the Canadian rare disease community. Mara is a TV reporter, disability advocate, and lifestyle creator who uses her platform to break stigma and spread awareness for those impacted by vision-related rare diseases, like herself.

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Jeremie’s story

Cystic Fibrosis

Jeremie Saunders is one of Patient Voice’s 2024 “Rare Creators” — someone who is using their online platform to uplift the Canadian rare disease community. Jeremie is one of the hosts of the Sickboy podcast and a dedicated cystic fibrosis advocate who uses his platform to spark conversations about health and access to innovative rare disease medicines.

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Angela’s story

Alpha-1 Antitrypsin Deficiency

Patient Voice spoke with Angela Diano about the numerous barriers that hinder progress when bringing innovative therapies to Canadian rare disease patients.

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Reine’s story

Behçet’s disease

Patient Voice spoke with Reine Hodroj about the role that patient organizations can play in helping to combat the isolation of living with a rare inflammatory condition like Behçet’s.

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Catherine’s story

Dementia + Caregiving

Patient Voice spoke with Catherine Mulvale about the pain, and the rare moments of beauty, associated with caring for a parent living with dementia.

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Lucas’s story

Li-Fraumeni syndrome

Patient Voice spoke with Lucas Locke about his family’s experience with Li-Fraumeni syndrome and his choice to not let it affect his life.

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Sarah & Benjamin’s story

Leukemia and adenoid cystic carcinoma

Patient Voice spoke with oncology mom and rare cancer survivor Sarah DeMelo about the challenges of balancing her son Benjamin’s cancer journey with that of her own.

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David’s story

Hyperacusis

Patient Voice spoke with David Vance about his frustrating journey with hyperacusis, a painful sensitivity to sound that leaves him seeking rare moments of escape.

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Kate & Etan’s story

OTC Deficiency

Patient Voice spoke with Kate Vinokurov about her son Etan’s rare disease diagnosis and why it’s important for her to feel in control amidst uncertainty.

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Shakhnoza’s story

Stillbirth

Patient Voice spoke with Shakhnoza Nasim about her family’s journey with grief following the loss of her first child, Muhubbat, who was born still.

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Daniel’s story

Lymphoma

Patient Voice spoke with entertainer and writer Daniel Stolfi to find out how important of a role comedy has played in his cancer recovery journey.

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Myles’s story

HIV

Patient Voice spoke with online creator and HIV advocate Myles Sexton about their journey to reinvent their life after being diagnosed with HIV.

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Chord’s story

Alagille syndrome

Patient Voice spoke with Tara and Ben Jaques about their son Chord’s rare diagnosis and how a life-changing medication has finally granted him a sense of peace.

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Eli’s story

Latent Autoimmune Diabetes (LADA)

Patient Voice spoke with Eli about being diagnosed with LADA at 30 years old as well as what inspired him to co-found a platform for fellow diabetes sufferers.

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Jason’s story

Colon cancer

Patient Voice spoke with cancer advocate Jason Manuge about his mother’s experience with colon cancer and how it’s shaped the way he views his own diagnosis today.

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Lorraine’s story

BPD & ADHD

Patient Voice spoke with Lorraine Lowry about being diagnosed with borderline personality disorder (BPD) and ADHD, and how these diagnoses have impacted her parenting.

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Allen’s story

Salivary duct carcinoma

Patient Voice spoke with Allen Chankowsky about receiving a terminal cancer diagnosis and how, seven years later, he continues to defy all expectations.

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In their own words

More stories of "rare" strength, perseverance, and hope from across Canada.

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Valeriya & Yaro’s story

Lissencephaly & Lennox-Gastaut syndrome

Patient Voice spoke with Valeriya Demydenko about sharing her son Yaro’s health journey on social media, and why she maintains a transparent dialogue about the difficult and joyful moments of their life.

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Neil’s story

Dystonia

Patient Voice spoke with Neil Merovitch about the concept of disability, and the influence of ableism in the scientific community as it has manifested in his own life.

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Growing in confidence: Thomas’s story

Growth hormone deficiency (GHD)

Karine’s son Thomas was diagnosed with growth hormone deficiency at five years old. But now, he’s doing better than ever.

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Cheryl’s story

Myeloproliferative neoplasms

Patient Voice spoke with Cheryl Petruk about how her late husband Eugene’s rare blood cancer journey has inspired a lifetime of advocacy.

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Luke’s story

Dravet syndrome

Patient Voice spoke with Leanne and Brian Michalofsky about their lifelong search for answers and a sense of normalcy for their son Luke.

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Nick’s story

Polycystic kidney disease

Patient Voice sat down with Nick Ashawasega to talk about the intersection of intergenerational trauma, mental health, and chronic illness in an impactful feature.

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Mercedes and Camila’s story

Autism

Patient Voice spoke with Mercedes Palermo about her daughter Camila’s autism diagnosis and their journey with behavioural therapy and advocacy.

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Justin’s story

Multiple sclerosis

Patient Voice spoke with Justin Loizos about discovering he was living with multiple sclerosis and how that diagnosis has deeply impacted his life and entrepreneurship goals.

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Amanda’s story

Ehlers-Danlos syndrome

Patient Voice spoke with Amanda McCallum about learning to manage the incurable pain of Ehlers-Danlos syndrome.

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Ben & Katherine’s story

Traumatic Brain Injury

Patient Voice spoke with Ben and Katherine in a 3-part series that explores Ben’s ongoing recovery from a traumatic brain injury and the loving bond that’s kept Katherine by his side.

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Heidi’s story

Mental Health

Patient Voice spoke with mental health advocate Heidi Fischer about taking control of her journey and the importance of community.

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Angela’s story

Brain Cancer

Patient Voice spoke with Angela Scalisi to learn about what—and who—motivates her to raise vital funds for brain cancer research in Canada.

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Deana & Liam’s story

Cystic fibrosis

Patient Voice spoke with Deana Wilson about her son Liam’s cystic fibrosis journey and how he has become self-empowered in making his voice heard.

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Jared’s story

Type III SMA

Patient Voice spoke with Jared Wayland from St. Catharines, ON about his SMA type III diagnosis and how it has impacted his life and fatherhood.

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Athina’s story

Craniocervical instability

Patient Voice spoke with Athina Hall to understand craniocervical instability and what needs to be done for chronic illness patients in Canada.

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Anaya’s story

Collagen VI-related dystrophy

Patient Voice spoke with Chanika Fernando and her husband Dean about their daughter Anaya, and what it’s like to be parents to a child who’s an N of 1.

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Renee’s story

Melanoma

Patient Voice spoke with Renee Abrenica about the important role that her gym community played throughout her metastatic melanoma journey.

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Leah’s story

Endometriosis

Patient Voice spoke with Leah Haynes about eliminating stigma around menstrual pain and her creation of a positive space for endometriosis advocacy.

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Tami’s story

Endometriosis

Patient Voice spoke with Tami Ellis about the layered impact of endometriosis and the power in advocating for a diagnosis.

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Erin’s story

Huntington’s disease

Patient Voice spoke with author Erin Paterson about confronting her Huntington’s disease diagnosis and what it might mean for the future.

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Emily’s story

CTEPH

Patient Voice spoke with Emily Pinckard about CTEPH, a rare and potentially fatal lung disease, and how it’s changed the course of her life.

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Ally’s story

Edema

Patient Voice spoke with Ally Ladak about raising awareness of what matters to him and getting involved in the community.

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Pamela’s story

Cowden syndrome

Patient Voice spoke with Pamela Fortier from Montreal, QC, about finding out she had Cowden syndrome and what it’s meant for her life ever since.

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Christine’s story

Crouzon syndrome

Patient Voice spoke with Christine de la Cruz, a schoolteacher born with Crouzon syndrome from Toronto, ON, who uses her experience to teach students about diversity and inclusion.

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Michelle’s story

Breast cancer

Patient Voice spoke with Michelle Friesen, a breast cancer survivor from Calgary, AB. She speaks about the importance of screening younger patients, survivorship, support, and reconciling with her body post-cancer.

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Alyssa’s story

Multiple myeloma

Patient Voice spoke with Alyssa Dickey, a Toronto, ON-based stay-at-home mom and multiple myeloma advocate about the uncertainty that goes hand-in-hand with a blood cancer diagnosis.

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Francine & Joseph’s story

Sanfilippo syndrome (MPS III)

Patient Voice spoke to Francine Saliba about Sanfilippo syndrome, a rare neurodegenerative condition that affects her young son, Joseph.

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An all-too-common concern for Canada’s “rare” community

Homozygous familial hypercholesterolaemia (HoFH)

An anonymous patient discusses the stigma of living with a rare, inherited disorder like HoFH.

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On seeking joy following a rare cancer diagnosis

Cholangiocarcinoma

Jules shares why she chooses to confront CCA with hope and optimism.

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It’s not all in your head

Myasthenia gravis

Morning show host Sandra Plagakis and her frustrating odyssey to being diagnosed with myasthenia gravis.

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Finding strength and stability in light of a dark diagnosis

Duchenne muscular dystrophy (DMD)

Sumaiya and Ibrahim share their journey with Duchenne muscular dystrophy.

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A reminder to always look for the zebra amongst the horses

Hereditary angioedema (HAE)

Kim shares how she ultimately arrived at an HAE diagnosis.

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Coming of age with XLH

X-linked hypophosphatemia (XLH)

Alice explores the unique challenges that come with balancing a busy life and transitioning to adult care.

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Balancing young adulthood with a fatiguing rare disease

Paroxysmal nocturnal hemoglobinuria (PNH)

Olivia opens up about her 12-year battle with paroxysmal nocturnal hemoglobinuria (PNH).

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Going to bat against a rare metabolic disorder

LCHAD deficiency

Andrew shares how LCHAD continues to impact nearly every aspect of his life.

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Teaming up to take on ALS

Amyotrophic lateral sclerosis (ALS)

Mark explores his evolution from professional athlete to advocate.

Shorts

Unravelling a family’s ties to Fabry disease

Fabry disease

Fatoumata’s quest to identify the rare condition affecting her family.

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Building a good life in a body slowly turning to bone

Fibrodysplasia Ossificans Progressiva (FOP)

Kathleen reflects on challenges and triumphs from her FOP journey.

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Munira’s story

Multiple Myeloma

When I was a child in Tanzania, I could see Mount Kilimanjaro from my window, mighty and immovable. Permanent. When you’re young, so much of life feels like that mountain. It’s unlimited and it’s not going anywhere. But we aren’t mountains.

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Isabelle’s story

Diffuse Intrinsic Pontine Glioma (DIPG)

Patient Voice spoke with Michal and Jackie Borkowski about the loss of their daughter, Isabelle or ‘Isa’, to a rare, deadly and especially cruel form of brain cancer called Diffuse Intrinsic Pontine Glioma (DIPG).

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