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.
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.
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.
Registered dietitian Emily Campbell shares some simple guidelines to support caregivers in prioritizing their health.
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.
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.
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.
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.
This piece was written by Brad Crittenden, the Executive Director of the Canadian Association of Pompe (CAP).
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Patient Voice spoke with William Aiello to learn more about Mario La Valle and his incredible accomplishment.
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.