My journey started in 1992, and it took around seven years ( and three miscarriages ) to receive a proper diagnosis. During my first pregnancy in 1992, my gynaecologist suggested that I take half a Disprin under my tongue each morning to prevent high blood pressure, so I did. My baby was born three weeks prematurely by C‑section after going into distress. They managed to save her, but we both developed a severe infection. The doctor said they could not determine the cause

A general pre‑race checkup in May 2019 turned my life upside down. I was training for my first marathon, which was meant to take place in Paris, France, and my focus was fixed on that dream run along the Champs‑Élysées. Even though I was heading towards a very fit fifty, I was feeling unusually tired, but I put it down to a frantic business acquisition, lack of time to train, inadequate sleep, and dealing with a recent death in the family. Hills were becoming harder to run, m

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