Why We Go Further: Tiffany’s Story

Cystic fibrosis (CF) is a complex disease that requires daily management, from treatments and medications to strict infection prevention. For Tiffany, who was diagnosed at four months old, this reality has shaped much of her life and at times, made her question what her future would look like.

While many people think of CF primarily as a lung disease, Tiffany wants others to understand that it affects far more than her respiratory system. Along with strict infection prevention and breathing treatments, CF impacts her digestive organs – including stomach, pancreas and liver – often causing pain and challenges with nutrition. It also carries lifelong emotional and mental health impacts that require just as much care and attention as the physical side of the disease.

“Growing up, I sacrificed a lot of trips and time with friends and family because I got sick easily. I was constantly juggling my life responsibilities with my health,” she said. “There were so many treatments every day just to maintain stability, and infections were something I had to prevent at all costs.”

In 2022, during a hospital stay, Tiffany began a gene-modulating therapy that has transformed her quality of life. The treatment has allowed her to imagine a longer, healthier future. But as she notes, the therapy is not a cure -, and access is not universal across Canada.

“Although it has changed my life for the better, it is not a cure,” she says. “Medications, treatments, and strict infection prevention measures remain part of my daily life – and many CF patients still do not have access to this therapy.”

Now 24 and pursuing a career in medical biology, she has balanced her health needs with her education, passions and goals for the future.

Tiffany’s experiences inspired her to study medical biology and pursue a career in health care.

“Having CF gave me a deep appreciation for human health and the medical field. I’ve always been curious about how the body works and how care systems can improve people’s lives,” she said. “The doctors, scientists and pharmacists who have helped me have inspired me to pay it forward and make a difference for others.”

Even while balancing studies with her health, Tiffany has achieved goals she once thought impossible.

“One of my proudest moments was completing my courses with the grades I hoped for while battling a respiratory infection that landed me in the hospital,” she said. “It took perseverance, but I proved to myself that I could do it.”

Tiffany hopes to inspire other young people with CF who may be struggling.

“Never give up on your goals,” she said. “You are stronger than your hardest challenges. Even in your most difficult times, there’s something hopeful waiting on the other side. My setbacks have always led to something beautiful.”

This is why Tiffany chooses to go further – for equitable access to life-changing therapies and, ultimately, for a cure. CF impacts more than just the lungs. It impacts every part of the body.

“Managing CF takes both physical and mental work,” she said. “Living with CF has changed my perspective on life. I never take the little things for granted – breathing deeply, feeling the sun on my skin, or waking up full of energy. The world feels like it’s gone from black and white to full of colour.”

Tiffany’s resilience and determination show why our community continues to go further for all people living with cystic fibrosis. Together, we can make sure stories like hers become the norm – not the exception.

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