Jono Lancaster on identity, rare conditions and the courage to embrace yourself

“I was fostered at two weeks old”: the beginning of a remarkable journey

From the outset, Jono speaks with striking honesty about being born with Treacher Collins Syndrome, a rare craniofacial condition affecting the development of facial bones. At just two weeks old, his biological parents made the decision that they could not cope a moment that could have defined Jono entirely, had he not been welcomed into a loving foster family who offered stability, warmth and a sense of belonging.

But even with love around him, growing up was anything but simple. Jono recounts the challenges of looking “different” in a world that can be unkind to anyone who does not fit its narrow expectations. He remembers the stares, the whispered comments, and the moments of loneliness that settled in long before he had the emotional language to name them. These reflections are tender, raw and painfully familiar to anyone who has experienced stigma, whether due to a rare condition, disability, appearance or identity.

Jono’s story highlights something often overlooked in discussions about rare conditions: the emotional and psychological weight they carry. While Treacher Collins Syndrome is primarily a craniofacial condition, its effects extend far beyond physical features. Jono describes:

• the early development of shame and self-doubt, before he even understood why people reacted to him

• the internal conflict of wanting to be invisible one moment and completely understood the next

• the health consequences of chronic stress and social exclusion

• the profound difference it makes when a child sees someone who looks like them thriving

His journey mirrors the experiences of many people living with rare or visible conditions and reinforces a truth that clinicians and researchers often note: representation, visibility and supportive relationships can profoundly improve mental health outcomes.

As Jono grew older, something within him began to shift. Instead of retreating inward, he chose to step outward to turn his formative experiences into a mission rooted in compassion, advocacy and education.

Today, he travels the world meeting families, supporting children with facial differences and delivering talks that encourage self-love and resilience. He speaks often about the pivotal moment he realised that the young Jono the boy who felt unworthy and unseen, deserved better. That transformation informs everything he does.

Jono explains that the work is not simply inspirational; it is health work. When children and families feel supported, informed and understood, their emotional wellbeing improves. Their confidence grows. Their sense of identity strengthens. His advocacy isn’t about heroism it’s about helping people live full, joyful, emotionally healthy lives.

When Jono published his memoir Not All Heroes Wear Capes, he expected it to resonate with people familiar with his story. What he didn’t anticipate was the outpouring of messages from adults who had never seen someone on television who resembled them; from teenagers who had spent years hiding from mirrors; from parents who finally found words to explain to their children that difference is not something to fear.

This response helped pave the way for his Channel 4 series Love My Face, which brought stories of visible difference into mainstream homes with tenderness and authenticity. Jono shares how stepping into TV presenting felt less like a career move and more like a responsibility an opportunity to give others what he never had as a child: someone who looked like him, living fully, confidently and joyfully.

In one of the most moving parts of the conversation, Jono discusses the moments that challenged him the most. He talks about the young boy who struggled to understand why he felt unwanted, the teenager who searched endlessly for belonging, and the adult who had to unlearn years of internalised self-criticism. His reflections reveal a deep truth about emotional health: healing is not linear, and identity is something we build piece by piece, often through pain as much as joy.

But Jono’s story is not a story of sadness. It is a story of intention of choosing light when darkness feels easier, of choosing connection when isolation feels safer, and of choosing to embrace yourself fully, even when the world hasn’t always known how to.