Sophie Martin, a 29-year-old from the Lake District, initially dismissed her gradual hearing loss as a consequence of listening to loud music. But when the sounds grew noticeably quieter in her right ear and tinnitus emerged, she sought medical advice—only to receive a life-altering diagnosis.
In June 2025, five months after first noticing symptoms, Sophie visited her GP, who ordered a CT scan. The results revealed a mass on her brain. Sophie was diagnosed with neurofibromatosis type 2 (NF2), a rare genetic disorder that causes noncancerous tumours to form on nerves, especially in the brain and spinal cord.
“I started to notice my right ear was losing hearing. Phone conversations were muffled, and my earphones suddenly seemed quieter,” Sophie recalled. “At first, I thought it was just from listening to music so much. I loved music, but now I can barely hear it.”
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As her condition worsened, Sophie experienced severe tinnitus and vertigo attacks. “In June, the hearing loss became drastic. I was asking ‘what?’ multiple times every conversation, and phone calls were impossible. The vertigo forced me to sit down until the episodes passed,” she explained.
Concerned by these worsening symptoms, Sophie’s GP referred her for hospital tests. The scan revealed seven benign tumours affecting her brain and spinal cord. That very night, Sophie received an urgent call from the Royal Victoria Infirmary in Newcastle: she needed emergency surgery to insert a ventriculoperitoneal (VP) shunt to drain excess fluid accumulating in her brain due to the tumours.
“Finding out I had a brain tumour was terrifying. I thought I just had an ear infection, so this felt surreal,” Sophie said.
After the shunt was placed, further imaging confirmed the extent of Sophie’s tumours. To receive specialized care, Sophie now travels three hours to Manchester, where a dedicated NF2 clinic is located. In January 2026, she underwent surgery at Salford Royal Hospital to remove an acoustic neuroma—a tumour impacting her hearing.
“Emergency surgery was necessary because one tumour had rapidly grown to 4.6cm and was causing damage,” Sophie recounted. “I was temporarily wheelchair-bound; the experience was frightening, but the operation lasted ten hours and the surgeons were incredible.”
Post-surgery, Sophie is coping with facial palsy, 90% hearing loss, and weakened vision. Despite these challenges, she remains optimistic. “The uncertainty is scary—tumours might be benign, but they can still cause serious harm. The doctors told me there’s a 50% chance I could pass NF2 to future children,” she shared.
One year after her diagnosis, Sophie continues to adapt and learn about living with this rare condition. “Sometimes it feels like I’m watching someone else’s life, but I’ve accepted my reality. It could certainly be worse,” she concluded.