Running for Awareness, a Sister’s Fight Against a Rare and Painful Disease
- Rare Diseases SA
- 1 hour ago
- 3 min read
Living with Epidermolysis Bullosa (EB) is a daily battle. Often referred to as “butterfly skin” disease, EB is a rare genetic disorder that causes the skin to be extremely fragile—so delicate that even the lightest touch can result in painful blisters and open wounds. For Toni Roberts, this isn’t just a medical condition; it’s her everyday reality. Simple tasks like putting on shoes or holding objects can be excruciating, yet she refuses to let her condition define her.
This year, Cady Ward, Toni’s older sister is taking on an extraordinary challenge—running the Two Oceans Marathon. Known as “the world’s most beautiful race”, this prestigious ultra-marathon in Cape Town attracts thousands of runners who traverse stunning coastal routes along the Atlantic and Indian Oceans. But for Cady, the race represents far more than just breathtaking views; it is a platform to raise awareness for rare diseases and to prove that resilience knows no limits.
Living with EB: A Daily Struggle
Toni’s life is dictated by constant medical care. Every day, she undergoes painful dressing changes to prevent infections, as her skin is prone to wounds that take an extremely long time to heal. Growing up, Cady witnessed firsthand the challenges Tony faced. Everyday activities, like wearing new shoes, required careful preparation to prevent painful blisters. Even fun outings to theme parks came with risks—Cady would test the rides first to ensure they weren’t too rough for her sister. However, the real struggle has been accessing proper medical treatment.
Access to proper treatment is another hurdle—most South African medical dressings are inadequate, often sticking to wounds and causing further damage. The gold-standard dressings, imported from Sweden, are prohibitively expensive, leaving many EB patients without the care they desperately need.
Beyond the physical toll, EB affects multiple aspects of Toni’s life. The disease impacts not only her skin but also her heart, lungs, and digestive system, requiring ongoing treatment from a range of specialists, including dermatologists, cardiologists, pulmonologists, and pain management experts. The psychological and emotional strain is immense, as is the financial burden of treatment. Tragically, many infants born with EB in South Africa do not survive beyond three months due to infections and inadequate care.
Running for a Cause
Cady has been participating in the Two Oceans Marathon for the past eight years, but this is the first time she is running for a cause—and this time, she won’t be doing it alone. Cady will be #Running4Rare alongside 59 other Rare ACTIVists who have chose to use their mobility to benefit others.
Inspired by her sister’s strength and perseverance, she is determined to help raise awareness for Rare Diseases South Africa, shining a light on the struggles faced by those living with Epidermolysis Bullosa and other rare conditions.
Training has been a challenge for Cady as she has had to balance her training with a demanding night-shift job. To stay motivated, Cady has been using a treadmill for late-night runs, setting goals, and creating an energetic 170 BPM running playlist to keep her pace steady. For Cady, this journey is about more than simply finishing a race. It is about raising awareness, advocating for better healthcare solutions, and showing the world that rare disease warriors are stronger than their conditions.
As many prepare to run the Two Oceans Marathon, Cady is running for every family affected by rare diseases. She is running for better access to treatment, for greater awareness, and for a future where conditions like EB are better understood and supported. Her journey is a testament to the power of determination, sisterhood, and the unwavering strength of those who refuse to let adversity hold them back.
On race day, every step they take together, whether emotionally or physically, there will be a victory—not just for them, but for the entire rare disease community.
Cady and Toni choose to be part of the 1% that are rare, what about you?
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