Written by Kelly du Plessis - CEO, Rare Diseases SA At Rare Diseases South Africa, we are privileged to walk alongside thousands of patients and families every month. Through our support programmes, awareness initiatives, and community spaces, we meet people at very different points in their journeys. Some are newly diagnosed and frightened. Some have lived with their condition for decades. Some are parents trying to understand what the future holds for their children. Others

We welcomed our beautiful baby boy at 40 weeks. He was perfect, just as we imagined. At only 6 weeks old, he was admitted for a bleeding gut. Little did we know that his health battle was far from over. At the age of 2, our son woke up in the early hours of the morning unable to breathe. This resulted in us rushing him to casualty every two weeks as doctors worked to stabilise his vitals. After many doctor visits and scans, he was diagnosed with Bronchomalacia , which is a c

From an early age, I began finding lumps under my skin or deep in my muscles. At first, I was told they were simply fatty lumps and nothing to worry about. That explanation worked until I developed one under my left armpit. I had it removed, and only then was I informed that it was a schwannoma. Later, another lump formed on my upper leg, and this time it was the size of a tennis ball. That triggered a deeper investigation, and doctors discovered that it was a growth on my ne