In 2012 at the age of 15 I was finally diagnosed with Idiopathic Intracranial Hypertension after years of doctors dismissing my parents concern of headaches and at some point, vision concerns from the age of 8-9 years old. It took far too long to have a diagnosis but all it took was one doctor to listen. They did the relevant testing and found that I had too much cerebrospinal fluid. As the years went on I progressively got sicker unfortunately. I was in and out of doctors o

For years, I was trapped in an exhausting cycle of psychiatric appointments and medication trials, believing that feeling unwell daily, was my new normal. Despite worsening symptoms — fainting, dizziness, tachycardia, fatigue, food sensitivities, exercise intolerance, brain fog and more — doctors were only able to offer ineffective treatments claiming my symptoms were all related to anxiety and depression. I had a psychiatrist tell me that "I just didn't want to get better" ,

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

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