Oluwadamilare Joseph, a 21-year-old student living with a rare genetic condition that causes tumours to grow on his face, is speaking out after years of relentless bullying. Diagnosed with trichoepithelioma at age six, he initially believed his condition was natural because his mother, brothers, and cousins also have it. However, as he grew older, strangers and schoolmates began hurling abuse, leading him to stop attending school on Fridays.
What Is Trichoepithelioma?
Trichoepithelioma is a rare genetic disorder that causes tumours to develop from hair follicles, most commonly on the face. It can present as a single lesion (solitary trichoepithelioma) or multiple lesions (multiple familial trichoepithelioma), as in Joseph's case. Growing up in Cross River State, Nigeria, Joseph faced increasing discrimination at school. He recalls: "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."
Raising Awareness on Social Media
In 2022, his sister Coltan, a 24-year-old photographer, began sharing photos of their family online to raise awareness. Joseph joined TikTok the following year and has since amassed over 100,000 followers. He uses the platform to educate people about trichoepithelioma, emphasizing that it is not contagious. "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," he said.
Ongoing Abuse and Misconceptions
Despite the support he receives online, Joseph continues to face abuse due to misconceptions. 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.'" He has been suspended from TikTok three times for raising awareness, and many have threatened to report his account. "People are ignorant," he added.
Encouraging Questions Over Assumptions
Joseph now frequently answers questions about his condition, hoping to foster understanding. 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 can remove the tumours, they may return over time. Joseph shares his journey on TikTok @threethousand_lightyear.
