I was twelve years old when I was diagnosed with Neurofibromatosis Type 2 (NF2) . My dad had it, and with a 50% chance of passing it on, my family always knew it was something we needed to watch for. Still, nothing could have prepared us for how my life would unfold. A Childhood Marked by Tumours and Treatment My first MRI revealed a tumour growing on my vestibulocochlear nerve. I had just turned thirteen when I began my first twenty‑eight sessions of radiation . Within month

My name is Reshmie , and I live with multiple rare diseases. Over the years, I have faced thyroid cancer , undergone a splenectomy , and had a portion of my pancreas removed in a pancreatectomy . My medical challenges have been heavy, unpredictable, and often overwhelming—yet I am not alone as I continue fighting. Every day I remind myself: I am still here, and I am still going. What Does “Equity” Mean in My Story? For me, equity begins with simply being heard . The hardest p

When Victoria (Vixi)  was diagnosed at just 15 years old  with Behçet’s Disease , everything we thought we knew about her health changed. Behçet’s is a rare, complex inflammatory disorder that most doctors have never seen in their careers. But long before her diagnosis, her symptoms were already shaping her life. Early Signs No One Could Explain Since she was little, Vixi struggled with painful mouth ulcers. We were given many explanations such as stress, vitamin deficiencies

As the last‑born daughter of Thomas and Nombulelo Sidzamba, I, Zintle , never imagined how dramatically my life would change after being diagnosed with Spinal Muscular Atrophy (SMA) Type 4)  in 2015. SMA Type 4 is a rare genetic disorder that affects the nerve cells responsible for voluntary muscle movement, causing progressive muscle weakness and atrophy. Before the Diagnosis Before SMA entered my life, I was active, energetic, and constantly on the move — playing tennis, da

My name is Ruhan Adendorff , I’m 34 years old , and I have a rare condition called Sotos Syndrome . I want to share my story with the world to spread motivation, encouragement, and Sotos love to all my wonderful Sotos people across the globe. My Journey with Sotos Syndrome I was diagnosed with Sotos Syndrome when I was five years old . Growing up as a child with Sotos was not easy. In fact, it was very hard. At school I was bullied and made fun of. People would say things lik

From the moment Luke was born, he would scream and scream. All his milk would come back up, and he began to refuse the breast. We tried formula, but the same thing happened. He was hungry, would try to drink, then pull away and cry. I was told it was colic. I was told he was being “naughty” and that it was behavioural. I was told it was allergies. We saw a gastroenterologist when he was 14 months old, and she performed a scope that confirmed EoE. It is a delayed reaction alle

When Aiden was born, we had never heard of Epidermolysis Bullosa (EB). The condition causes severe blistering and shearing of the skin. Aiden’s first blisters appeared when he was just five days old. Our doctors here were at a loss. He was treated with antibiotics because they believed it was an infection. We eventually got an appointment with a specialist dermatologist when he was eight months old. A skin punch biopsy was taken from his hand, and that’s when the diagnosis of

I have been living with a clotting disorder for 16 years. I was only 20 when I experienced my first DVT and pulmonary embolism—and I didn’t even realise what was happening at the time. I was very active, so I assumed I had pulled a muscle in my leg. I was limping badly, and my mom told me that if it wasn’t better in three days, I needed to see a doctor. I brushed it off, insisting it was just a muscle strain. On the third night, while bathing, I noticed my leg had a bluish co

I can still remember the day we received that horrific phone call like it was yesterday… Newborn screening tests only started at the specific hospital the year Milandré was born, and they were not compulsory. I thank God every day that I gave permission for that test, even though at the time I had no idea what it was and just wanted the nurses to leave me alone. Milandré was only about a week old, and we were on our way back to our hometown after spending a few days with my p

During the first three months of my pregnancy, I contracted Covid‑19. At the 12‑week blood tests, the results showed a low risk for Down syndrome but a high risk for Trisomy 13 and Trisomy 18. At that stage, the fetal specialist did not observe anything unusual. As the pregnancy progressed, however, my gynaecologist noticed that the baby was falling further and further behind on the growth chart . We returned to the fetal specialist around 22 weeks. He detected a small hole i