Michael now uses his social media platform to turn his experience into advocacy10:19, 04 Jun 2026A man who assumed his hearing loss was a part of getting older was shocked to find out it was a symptom of a rare genetic brain tumour. Michael Archer joked with his workmates that he was going deaf and his legs weren’t as strong as they used to be after he turned 30.‌But, in September 2022, he went and got his ears cleaned and later booked in with a physiotherapist, who referred him back to the doctor as she suspected the weakened muscles were a neurological issue. In the summer of 2024, Michael was sent for an MRI at Hinchingbrooke Hospital and blood test.‌The results were clear, and he was diagnosed with neurofibromatosis type 2 (NF2). This is a rare genetic condition characterised by the growth of non-cancerous tumours on nerves, particularly the brain and spinal cord.‌Michael, from St Neots in Cambridgeshire, said: “When I started working in an office, it became an inside joke that ‘Michael is deaf’. I’d always been fit and played football, but my body stopped working as it should."I felt weaker, and my coordination felt off. I was so scared after my diagnosis, my whole world had been completely changed and tipped upside down."‌As his symptoms started to worsen after his 30th birthday, Michael decided to go to the doctor, who initially said they weren’t concerned. It was only when Michael went to the physiotherapist in March 2024 because he felt that his problems were muscular, that more checks were done.He told Talk to the Press: "I could have brushed these symptoms off as just getting old, as they really started after I hit 30. I was really blasé about it and didn’t expect anything bad at all.‌"I sat with the doctor and he did some tests on my legs and then showed me two tumours in my brain and two on my spinal cord. I was stunned and just couldn’t grasp what was happening to me. I cried the whole way home to my friends and thought 'f*** I’m going to die'.”The tumours are compressing his spinal cord, which causes stiffness in his legs and coordination issues. After his diagnosis in October 2024, Michael said he turned to drinking.‌He said: "It sounded like a death sentence, so my first reaction was complete depression. I started drinking heavily and struggling to cope, I basically got drunk to run away from the diagnosis for the first few months."Overnight, the whole life you imagine is gone and not going to be what you thought.” Michael, who is now being treated out of Addenbrookes Hospital, has to have surgery in October 2026.Straight after surgery, he will be put on Avastin, a medicine that should stop the brain tumours growing any further. One of his brain tumours has grown by 3mm in six months, so he imagines he will be on Avastin for the rest of his life.‌He said: "It is like a lottery where the tumours will grow. You are always uncertain, and you don’t know what's around the corner."Michael now uses his social media platform to turn his experience into advocacy, raising awareness and money because everything he found online was "pretty grim" and "all of the NF2 studies were out of date". He said: "I decided to go on Instagram and talk about my experience and see if I could connect with others in the same position.Article continues belowFrom his social media posts, Michael began the “F*** NF2” campaign. He creates content and sells t-shirts to raise money, with half of the profits going to the Cure NF2 Foundation, a national charity supporting research.