Warning: This article contains discussion of suicidal thoughts which some readers may find distressing.
A man with Treacher-Collins syndrome has explained how he went from thinking he didn’t ‘have a future in this world’ as a teenager to loving the way he looks.
Jono Lancaster has Treacher-Collins syndrome and was given up by his birth parents shortly after he was born, later adopted into the ‘coolest’ household with a mum who fostered children with disabilities.
Treacher-Collins – also known as mandibulofacial dysostosis – ‘is a congenital (present at birth) condition affecting the bones and tissues in the face,’ Great Ormond Street Hospital for Children explains.
It affects one in 50,000 births and is caused by a mutation in one of three genes which play an important role in how bone and tissue cells develop early in pregnancy.
Jono is raising awareness of the condition and how it impacted him growing up (LADbible Stories)
The symptoms range from ‘mild to severe’, but many children often experience ‘problems with their cheekbones, jaw and eye sockets forming’ and some ‘also have a cleft (hole) palate and coloboma – notch in the lower part of the eye’.
Jono, now 41, is a published author and travels the world raising awareness of the condition, explaining he often used to ‘imagine life without’ the rare condition as a child, but as an adult ‘can now look at’ his face ‘absolutely’.
He told LADbible Stories that, thanks to growing up in a ‘diverse’ household, he initially never ‘thought of myself as being different’.
But when he started high school, other children ‘would pull their eyes down, they would make stupid chants up about [his] hearing aid’.
As a teenager, his mental health declined to the stage that he ‘started to think about death and dying on a daily basis’.
Jono faced cruel comments from bullies at high school (Jono Lancaster)
Jono explained he heard the Radiohead song ‘Creep’ mid-way through high school and identified with the lyrics.
“It was that ‘I don’t belong here,’ that really stayed with me. I was like, ‘I look like this.’ I would look in the mirror and push my eyes up,” he explained.
Jono recalled that anytime anything ‘bad’ happened in his life, he would ‘always put it back to [his] face’.
“‘Oh, it’s ’cause of my face, if I looked like everybody else, I wouldn’t be going through all this, and I hated it,’ he said.
“I didn’t see anybody with a visible difference that was married, that had a family, that was successful.
Jono Lancaster turned down cosmetic surgery in his teens (LADbible Stories)
“I was like, ‘I don’t belong in this world, I don’t have a future in this world,’ and as a late teenager, my late teenage years, I thought about dying every day.”
Despite debating surgery and the possibility of getting prosthetic ears, Jono reflected on struggling as a child with the desire to have ‘a completely different face’ rather than ‘improving’ his own.
Thankfully, Jono now looks at his face in a completely different way since becoming an adult, revealing he can look at it ‘absolutely’.
He continued: “Every time I smile, I have one dimple, my blue eyes change colour depending on what I’m wearing or my mood. My ears, they don’t get cold in winter, they don’t pop on flights and I absolutely love them. I absolutely love my beautiful face.”
He resolved: “When it comes to cosmetic surgery or when it comes to treatments, that’s my story, and I know other people that do choose to have surgery and do choose to have changes and that’s right for them, but this was my journey and that’s what was right for me.”
You can watch the full interview with Jono here.
If you’re experiencing distressing thoughts and feelings, the Campaign Against Living Miserably (CALM) is there to support you. They’re open from 5pm–midnight, 365 days a year. Their national number is 0800 58 58 58 and they also have a webchat service if you’re not comfortable talking on the phone.
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