Perspectives

It’s time to acknowledge that survival and quality of life aren’t the same thing

Normalizing the dialogue around one’s preferences and expectations helps patients have a life they believe is worth living.

Perspectives

Adventures in dating: A guide to navigating new relationships after cancer

Following my breast cancer diagnosis and double mastectomy, I found the mere thought of dating — or being romantic — daunting. Now, six years and many therapy sessions later, I’m still re-learning to love my body and embrace my sexuality.

Perspectives

Navigating the painful transition from being cared for to caring for my mom

My mother, Anne, once played a vital role in caring for my sister and me. Now, many months after her advanced vascular dementia diagnosis, I’m working to adjust to my role as her sole caregiver.

Perspectives

Seeking to understand the rare disease lurking in my family’s DNA

In 2021, I discovered that I’d lived my entire life with a rare genetic condition called Fabry disease. What I didn’t realize, however, was that my diagnosis was only the beginning of an entirely new set of challenges.

Perspectives

Understanding NMOSD

Patient Voice spoke with Dr. Dalia Rotstein to learn more about neuromyelitis optica spectrum disorder (NMOSD), a rare and debilitating inflammatory disease that affects the optic nerve, spinal cord, and brain. She discusses similarities and differences between NMOSD and multiple sclerosis (MS) and why prompt diagnosis and appropriate disease management are crucial.

Perspectives

Understanding NF1

Patient Voice spoke with Dr. Lucie Lafay-Cousin about neurofibromatosis type 1 (NF1), a rare genetic condition that is usually diagnosed in childhood.

Perspectives

Understanding EB

Patient Voice spoke with Dr. Wingfield Rehmus about epidermolysis bullosa (EB), the rare skin disease affecting approximately 300 to 500 people in Canada.

Perspectives

Awakening my inner lioness

At first, my son’s rare disease diagnosis left me feeling completely helpless. Now I openly share how I overcame fear, shame, and isolation and found the strength I needed to succeed as a mom.

Perspectives

The unifying force of online patient communities

Following my Behçet’s diagnosis, I yearned for connection as a way of navigating life with a rare disease. What I found helped me to not only survive, but thrive.

Perspectives

Loving the body I’m in even after it changed in ways I never could’ve imagined

In 2018, I was blindsided by a breast cancer diagnosis and was forced to undergo a double mastectomy. Now, nearly six years later, I choose to champion body love and self-acceptance instead of mourning what I’ve lost.

Perspectives

Confronting the other dreaded D-word: Divorce

Our son Beau’s rare disease diagnosis turned our world, and our marriage, upside down. Fortunately, my husband and I were able to learn how to grieve independently, support each other when needed, and overcome our shared fear of divorce.

Perspectives

Understanding CLL

Patient Voice spoke with Dr. Philip Kuruvilla about chronic lymphocytic leukemia (CLL), the most common form of leukemia found in adults. He explains how the disease is diagnosed, monitored, and treated, and describes why it’s a time of profound hope for patients and their loved ones.

Perspectives

One on one with Charlotte Grad

In 2018, Charlotte Grad was among the first Canadian lymphoma patients to receive access to CAR T-cell therapy. Now, in anticipation of celebrating five years in remission, she chooses to embrace every opportunity to advocate for the innovative treatment that saved her life.

Perspectives

How to care for yourself while caring for a loved one with a chronic illness

Registered dietitian Emily Campbell shares some simple guidelines to support caregivers in prioritizing their health.

Perspectives

Stronger and wiser: A woman’s trail guide to aging

Throughout my long career as a family physician, I’ve met so many women at so many different points in their journeys. I’ve helped these women interpret the markers along their way, assisted them in navigating and understanding the health hazards that are tripping them up, and provided guidance at major forks in the road.

Perspectives

One on one with Rick Zwiep

Patient Voice spoke with ALS patient advocate Rick Zwiep about how life has changed following his diagnosis, as well as what motivated him to become an outspoken advocate for equitable access to innovative treatments.

Perspectives

You’ve been diagnosed with chronic kidney disease — now what?

Emily Campbell is a registered dietitian specializing in renal nutrition, and she’s here to share concrete advice to help empower you to make the right decisions for your kidney health.

Perspectives

A beginner’s guide to navigating life with diabetes

A diabetes diagnosis can be daunting. We engaged certified diabetes educator and renal dietitian Emily Campbell (@kidneynutrition) to help you better understand the condition and learn how to effectively manage it.

Perspectives

Opinion: Newborn screening for Pompe would significantly lessen the disease’s impact on Canadian families

This piece was written by Brad Crittenden, the Executive Director of the Canadian Association of Pompe (CAP).

Perspectives

Understanding FOP

Patient Voice spoke with Dr. Angela Cheung about fibrodysplasia ossificans progressiva (FOP), an ultra-rare musculoskeletal condition that transforms muscle and tendon into bone. She explores how understanding of the disease has evolved in recent years and why it’s especially challenging to develop therapies for ultra-rare patient populations.

Perspectives

Understanding Fabry disease

Patient Voice spoke with Vancouver-based medical geneticist Dr. Anna Lehman to learn about Fabry disease, what symptoms to watch for, and when to get tested.

Perspectives

Understanding cholangiocarcinoma

Patient Voice spoke with Dr. Jennifer Knox to learn more about cholangiocarcinoma (CCA), a group of cancers that occur in the bile ducts. She discusses the ongoing challenges associated with treating rare cancers and why it’s a promising time for Canada’s CCA community.

Perspectives

Understanding HoFH

Patient Voice spoke with Dr. Liam Brunham about homozygous familial hypercholesterolemia (HoFH), a rare and life-threatening condition characterized by high levels of cholesterol in the blood. He explains why early diagnosis and prompt intervention are key to ensuring positive patient outcomes.

Perspectives

Understanding DMD

Patient Voice spoke with Dr. Craig Campbell about Duchenne muscular dystrophy (DMD), a severe genetic disorder characterized by progressive muscle degeneration. He discusses who’s primarily affected and why, along with the various approaches to treatment that are currently being investigated.

Perspectives

Understanding LC-FAODs

Patient Voice spoke with Dr. Aziz Mhanni to learn about a rare, life-altering group of metabolic conditions known as long-chain fatty acid oxidation disorders (LC-FAODs). He discusses symptomology and how these disorders tend to impact quality of life for patients and caregivers alike.

Perspectives

Understanding HAE

Patient Voice spoke with Dr. Stephen Betschel to learn more about hereditary angioedema (HAE), a condition that involves recurrent attacks of severe swelling. He explains how each type of HAE presents and what patients can do to optimize their mental and physical health.

Perspectives

Understanding PNH

Patient Voice sat down with Dr. Monika Oliver to learn about paroxysmal nocturnal hemoglobinuria (PNH), a rare and mysterious disease that leads to the premature breakdown of red blood cells.

Perspectives

Understanding XLH

Patient Voice spoke with Dr. Leanne Ward to learn more about X-linked hypophosphatemia (XLH), a rare disorder characterized by low levels of phosphate in the blood. She discusses why patients require multi-disciplinary care and how the Canadian health care system can better support all rare disease patients.

Perspectives

Understanding ALS

Patient Voice sat down with Dr. Gord Jewett to learn more about amyotrophic lateral sclerosis (ALS), a rare and fatal neurological condition that causes progressive muscle weakness. He discusses diagnosis, treatment access barriers, and the benefits of specialized, disease-specific clinics.

Perspectives

Understanding gMG

Patient Voice spoke with Dr. Dubravka Dodig, a neuromuscular neurologist, to learn about generalized myasthenia gravis (gMG), a rare autoimmune disease that can cause debilitating muscle weakness.

Perspectives

Day in the life of a young person living with arthritis

As a 26-year-old woman with arthritis, my daily life is definitely different from my peers. I’m going to show you a little glimpse of what my life is like on a daily basis.

Perspectives

5 tips for getting the most out of your next doctor's visit

Doctor’s appointments can be intimidating and overwhelming. When I first started seeing doctors and specialists regularly, I wasn’t sure how to go about them. Over the years, I’ve compiled a pretty good checklist to help me get the most out of my appointments.

Perspectives

Remembering and honouring Mario La Valle: A heartfelt Q&A with CTV News' William Aiello

‍Patient Voice spoke with William Aiello to learn more about Mario La Valle and his incredible accomplishment.

Perspectives

Lilianna Wilde talks career, kindness and her personal connection to rare disease

‍Patient Voice chatted with Canadian singer-songwriter Lilianna Wilde to discuss her personal experience with rare disease, the lessons all Canadians can learn from stories like her father’s and why everyday kindness is so important.

Perspectives

A glimpse into the busy life of a rare disease 'super mom': Q&A with Kyla Thomson

Throughout her daughter Bella's ongoing health challenges, Kyla Thomson (@kylact) has found support, encouragement and connection through social media platforms like TikTok and Instagram.