Sophie Martin, a 29-year-old woman from the Lake District, thought her fading hearing was simply a result of listening to loud music. But what started as quieter earphones quickly escalated into severe tinnitus and a startling diagnosis: a rare genetic brain tumour caused by neurofibromatosis type 2 (NF2).
Five months after her symptoms began, Sophie visited her GP. A CT scan revealed a mass on her brain, leading to her diagnosis with NF2, a rare condition characterized by benign tumours growing on nerves in the brain and spinal cord.
“I first noticed slight hearing loss in my right ear," Sophie recalls. “Phone calls sounded muffled and my earphones were quieter on that side, but I didn’t think much of it because I was always listening to music. Now, I can barely hear it.”
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Her condition worsened with episodes of vertigo and significant hearing impairment, prompting urgent medical attention. Immediately after her scan, Sophie was called back to hospital due to a dangerous build-up of fluid on her brain, requiring emergency surgery to insert a VP shunt.
Further scans showed seven benign tumours on her brain and spinal cord. Treatment involves traveling three hours to Manchester, where specialist NF2 care is available. In January 2026, Sophie underwent surgery to remove an acoustic neuroma, a tumour affecting her hearing.
“The tumour had grown rapidly to 4.6cm and was causing damage. I was temporarily wheelchair bound after the 10-hour operation. Though I now face facial palsy, significant hearing loss, and weakened vision, I’m staying positive,” she said.
Despite the challenges, Sophie is determined to keep an optimistic outlook. She’s learning to live with NF2, understanding the risks it poses to her and potentially her future children, who would have a 50% chance of inheriting the condition.
“It’s still surreal and frightening, but I’ve accepted it. It could be much worse,” she reflects, embodying resilience in the face of a daunting diagnosis.