Case Study #120 - Oliver Advocating for the NF Community

Oliver Advocating for the NF Community sketch

Oliver was born in Cape Town, in South Africa in 1982, and is the oldest of two children. Oliver and his brother were both diagnosed with Neurofibromatosis (NF) at birth and inherited it from their father. NF, particularly type 1, which is the type that they have, is a rare condition characterised by the presentation of tumours which occur at the nerve endings. These appear as little bumps and lumps under the skin. The smaller tumours are called neurofibromas and the larger tumours which cause craniofacial differences are called Plexiform fibromas. Oliver has had both types of tumours. Oliver was born with a plexiform fibroma over his right eye, which grew over time through childhood and into adolescence and yound adulthood. This resulted in a droopy eye. Successive rounds of neuropsurgery were performed on Oliver to debulk the tumour, but because they were trying to preserve the right eye, the tumour kept growing back. In 2022, Oliver had craniotomy surgery called to remove the right eye and finally the tumour totally. Because of all the damage the tumour caused, he had a PEAK or plastic skull inserted to help with symmetry or cosmesis. Apart from all the brain surgery, Oliver has had multiple surgeries to remove the neurofibromas when they have become too big. Surgery is a way of life for people with NF. Oliver has faced a lot of discrimination because he looks different. He now campaigns on social media to raise awareness for the joint communities of people living with NF and Visible Differences. He is a motivator, speaker, writer and content creator. His full time day job is as a Mental Health Crisis Worker for the National Health Service in the United Kingdom.