A rare disease… Where do I begin? Sometimes life forces us to live with our pain. No matter how many times you can smile on a random day, there is still that sad part of you that is hidden deep within. You learn to live with the pain simply because the world keeps moving. You go on living your life as if everything is normal but truly speaking, that is isn’t the case. It’s RARE. The fact that I am able to put down my experience in writing of a part of me that I wouldn’t h

Background and Life Before Illness I was a healthy, independent, and active woman. I lived and worked in Johannesburg, was employed as an accountant, and led a full and joyful life. I exercised regularly, socialised, entertained friends, attended church, and managed my home without difficulty. I experienced no significant health problems and lived without physical limitations or chronic employment. I began experiencing pins and needles in my hands and feet, skin rashes, and

Can you tell us about your journey and how it all began? Most people think a diagnosis is just a word on a medical file. For me, it was a moment that completely changed how I saw my body, my childhood, and my future. At ten years old, I went from standing in line at the movies with my family to navigating hospitals, MRIs, and questions no child should have to answer. Suddenly, my life had rules and regulations — limits on movement, sport, and things I once took for granted. I

For the past 10 years, I have been living with Trigeminal Neuralgia, a rare and often misunderstood neurological disease . It is a condition that has changed my life in ways words sometimes struggle to explain. The pain is sudden, intense, and unpredictable — like electric shocks to my face. Simple everyday activities such as talking, eating, brushing my teeth, smiling, or even feeling a light breeze can trigger unbearable pain. What others do without thinking can feel like a

My name is Ilze, and I was born with a rare heart condition . My parents lost my older sister at just 3 days old to the same disease. Two years later, I arrived with the same condition—but thanks to improved medical technology, I am here today at 51. Ilze In the early 2010s, I started struggling to lift my arms and even swallow. I saw so many doctors and went through countless tests that I eventually gave up on finding a diagnosis. One day I visited my GP for what I thought

Johannesburg - 6 November 2025 We are disconcerted by a media statement apparently issued by Medihelp Medical Scheme and referred to on the website of “Moonstone Information Refinery Pty Ltd” following the judgment of the Pretoria High Court in the matter of De Wet v Medihelp. Medihelp’s statement in the aforesaid article that Judge Swanepoel’s judgment “finds that it should not fund the cost of [Zach’s] Elaprase” is factually incorrect, and its statements that Judge Swanep

Pretoria, 31 October 2025 ~ The de Wet family and Rare Diseases South Africa (RDSA) welcome today’s High Court judgement delivered by Swanepoel J in the Gauteng Division, Pretoria, which declares Medihelp Medical Scheme in contempt of court and compels immediate compliance with an earlier order to fund prescribed minimum benefit (PMB) care for four-year-old Zachary de Wet, who lives with Hunter’s syndrome (MPS II). This ruling follows years of litigation, during which the Co

SA) set out to honour Madiba’s enduring belief in the power of education by launching a heartfelt initiative: Imagination Stations

In March of this year, our family received a diagnosis that changed our lives — Pitt Hopkins Syndrome. As we navigate this new reality,...

Johannesburg, South Africa – 17 September 2025 – The bustle of Charlotte Maxeke Johannesburg Academic Hospital looks a little different...