I’m a 36-year-old mum of three little humans – things like this just doesn’t happen to people like me. Until all of a sudden it does, and everything changes

Blurry vision had led to a diagnosis of Von Hippel-Lindau (VHL) disease – a condition where multiple tumours grow in various parts of the body, including the brain, spinal cord, abdominal organs, and eyes.

We need greater awareness of VHL, better education for healthcare professionals, and up-to-date resources to guide patients through diagnosis and care.

I was in my late twenties when I first realised something wasn’t right. I began experiencing numbness in my back, and after months of tests and uncertainty, doctors discovered a cluster of tumours in my spine. That’s when I was diagnosed with VHL.