'Rare condition means I have tumours all over my face - you wouldn't believe how cruel people can be'

'Rare condition means I have tumours all over my face - you wouldn't believe how cruel people can be' After years of being bullied over a rare genetic condition that causes tumours to grow on his face, a student is now raising awareness to stop the misconceptions he faces A man with a rare skin condition believed it was “natural” - until strangers began hurling abuse. Oluwadamilare Joseph, 21 , was just six years old when he was diagnosed with trichoepithelioma, a rare genetic condition that causes tumours to grow from hair follicles, most commonly on the face. Because his mum, brothers and cousins all live with the condition too, the 21-year-old said he never thought anything of it growing up - until he began facing relentless bullying. He said: “For me it started when I was six-years-old so I was very little. I wasn’t really concerned as there were more people in my family who had it and I was told it was something natural. The rare condition can cause either a single lesion, known as solitary trichoepithelioma, or multiple lesions, as in his case case, known as multiple familial trichoepithelioma. Growing up in Cross River State, Nigeria, Oluwadamilare said school became increasingly difficult as other children targeted him because of his appearance. He said: “In secondary school I faced a lot of bullying and discrimination. The bullying got so much worse I had to stop going to school on Fridays. It hasn’t been easy. “Some people stop me on the street to ask questions that I have to live with for the rest of that week.” In the hopes of educating people about his condition Oluwadamilare began posting about trichoepithelioma on social media after his sister Coltan, 24, a photographer, started sharing photos of their family online in 2022 to raise awareness. He joined TikTok the following year and has since built an audience of more than 100,000 followers He said: “It’s still hard, I still need more people to be aware of what the condition is. Trichoepithelioma is not contagious - people think it’s contagious but it’s not it’s genetic.” Despite receiving support from many people online, Oluwadamilare said he continues to face abuse because of misconceptions about the condition. He said: “People have reacted positively and others negatively but I don’t focus on the negativity, I focus on the positivity. “For example people say I’m not supposed to be outside and I should be isolated. So many people send me direct messages saying ‘bro you need to delete your account’ or ‘stop posting’. “So many people have been threatening to report my account. I have been suspended three times for raising awareness. People are ignorant.” Now, he often answers people’s questions about the condition and hopes that will encourage people to ask questions instead of jumping to conclusions. He said: “I prefer people asking questions rather than making assumptions as long as they are not condescending. People often make assumptions about me and my condition. “They say ‘oh this is contagious’ or ‘this is monkey pox’ or ‘this is chicken pox’. I understand them, you fear what you don’t know”. Although surgery is available to remove the tumours, they can return over time. He shares his journey on TikTok @threethousand_lightyear.