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Walking the Line: Governance, Patient Voice, and Patient Safety
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
8 hours ago3 min read
Our Brave Boy: Kaisyn’s Story of Courage
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
14 hours ago2 min read
Drive to survive even when the challenge stack up
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
2 days ago2 min read
Transverse Myelitis (TM) is REAL – and it HURTS
My symptoms began on 13 March 2022.I received my diagnosis on 23 March 2022, so it took ten days in total. The main reason for the delay was a long weekend, which made it difficult to get an appointment with a neurologist. I was hospitalized for three days and treated with intravenous steroids. During that time, I could not walk without a walker, and it took seven months before I was able to drive again. Today, I can walk normally, although my feet begin to burn if I walk too
3 days ago2 min read
Tired of Being Judged and Labeled
My symptoms began in childhood, but everyone said it was “growing pains". I went from doctor to doctor, and each one dismissed me. They told me it was all in my head, that I was depressed, that I was a hypochondriac who wanted attention. At one point I was even told I had fibromyalgia, but deep down I knew that was not the answer. I had a gut feeling that something else was wrong. After years of being unheard, I finally gave up searching for help at age thirty. It was only af
4 days ago2 min read
My Life Is Proof That God Is Still Working
I was born with something I did not choose. It is a rare genetic condition passed down and written into me before I ever had a say. TMAU. For a long time, I did not know its name. I only knew the feeling of being different, even when I could not explain why. When I was younger, it was not so obvious. I could blend in. I could feel normal. But as I grew older, the condition grew with me. The odor became stronger, harder to control, and harder to hide. No matter how much I tri
5 days ago4 min read
Juván Miracle Mission
In June 2024, our three‑month‑old son, Juván , suddenly became severely ill with unrelenting diarrhea. What seemed like a simple virus became a long and terrifying medical journey. After months of hospital stays, countless tests, and endless uncertainty, he was diagnosed with Autoimmune Enteropathy (AIE) — a rare, life‑threatening condition where the immune system destroys the small intestine, preventing the body from absorbing nutrients. Despite breastfeeding, specialised f
6 days ago2 min read
A Decade in the Fire: My Journey with CRPS
I had issues with my right hand and arm before. It would curl up—like I was having a stroke—followed by about a week of pain and swelling. Movement tests, Nerve Conduction Studies, and CT scans showed nothing. Consequently, I was told it was "all in my head"—probably just stress. Because, apparently, stress makes your hand swell up like a balloon. I eventually gave up investigating. I assumed it was a flaw in my makeup, much like the buzzing in my ears that doctors also dismi
7 days ago5 min read
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