Oluwadamilare Joseph, a 21-year-old student from Cross River State, Nigeria, has reached more than two million people worldwide by sharing his story on social media. He has trichoepithelioma, a rare condition that causes hundreds of benign tumours to appear on his face.
Diagnosis and family history
Joseph was diagnosed when he was six years old. His mother, brothers, and cousins all have the condition. The tumours originate from hair follicles and appear as small, flesh-coloured nodules, often on the face. In his case, it is multiple familial trichoepithelioma, which can sometimes mimic basal cell carcinoma.
Growing up was tough. Joseph faced bullying and discrimination in secondary school, which became so severe that he stopped attending school on Fridays. He says, “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.”
Social media awareness campaign
Joseph’s sister Coltan, 24, a photographer, began sharing photos of their family online in 2022 to raise awareness. Joseph followed in 2023 on TikTok under the handle @threethousand_lightyear and has amassed 100,000 followers. He says, “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.”
Reactions have been mixed. Joseph focuses on the positive but has faced negative comments and threats. “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 says. His account has been suspended three times for raising awareness.
Misconceptions and questions
Joseph encourages people to ask questions rather than make assumptions. “I prefer people asking questions rather than making assumptions as long as they are not condescending,” he says. Common misconceptions include that his condition is contagious, monkeypox, or chickenpox. “I understand them, you fear what you don’t know,” he adds.
Surgery is available to remove the tumours, but there is a risk they may return.
