Hello, I'm Zoe Castle - Living with 22q, Finding My Voice
When someone with 22q sees another person living a full life, chasing dreams, working, writing books, advocating, or simply being themselves, it sends an important message: our diagnosis does not decide our future.
Hello everyone,
My name is Zoe Castle, and I am incredibly honoured to be joining the 22q Family Foundation as one of its blog writers. Having the opportunity to share my experiences, connect with this amazing community, and help spread awareness about 22q11.2 deletion syndrome means more to me than I can put into words.
A little about me:
I was born with 22q11.2 deletion syndrome, also known as 22q or DiGeorge syndrome. Unlike many people who spend years searching for a diagnosis, I’ve always known about mine. It has been part of my life since the day I was born, and although it has shaped many aspects of my journey, it has never defined who I am as a person.
Living with 22q has meant facing challenges that many people never see. I was born with a congenital heart condition called Tetralogy of Fallot, and throughout my life, I have undergone two open-heart surgeries. I also live with partial hearing loss, partial sight loss, scoliosis, and a mild learning disability. Each of these comes with its own obstacles, but together they have taught me resilience, determination, and the importance of never giving up.
Growing up wasn’t always easy. Much of my childhood was filled with hospital appointments, medical check-ups, and moments where I realised I was different from the children around me. There were days when I wondered why life seemed to be more complicated for me. I had to work harder in school because of my learning disability, adapt to hearing and seeing the world differently, and learn to accept scars that told the story of battles most people would never know I’d fought.
One of the biggest challenges of living with a rare condition is feeling invisible.
So many people have never heard of 22q, which often means constantly explaining your diagnosis or correcting misunderstandings. People may look at you and assume you’re completely healthy because they can’t see everything happening beneath the surface.
Hidden disabilities can be incredibly lonely. You might look perfectly well one day while quietly managing fatigue, medical appointments, anxiety, hearing difficulties, vision challenges, or the emotional weight that can come with living with a lifelong condition. That’s something I hope to shine a light on through these blogs.
Because despite every challenge, I have never wanted my diagnosis to be the end of my story.
Instead, I decided it could become the beginning of my purpose.
Today, I’m proud to be a disability advocate.
Through social media, I create content that educates people about hidden disabilities, encourages inclusion, and challenges outdated stereotypes. Every conversation I have and every video I post is another opportunity to raise awareness—not just about 22q, but about disability as a whole.
One of my proudest achievements has been becoming a published author. Writing my book gave me something I didn’t even realise I needed—it gave me a voice. It allowed me to turn years of experiences, emotions, fears, and hope into something that could inspire other people. If my words help just one person feel understood or give one family hope, then every moment spent writing was worthwhile.
I’ve come to realise that representation is incredibly powerful. When someone with 22q sees another person living a full life, chasing dreams, working, writing books, advocating, or simply being themselves, it sends an important message: our diagnosis does not decide our future.
Do I wish life had always been easier? Of course.
There have been moments of fear, uncertainty, frustration, and heartbreak. Living with a congenital heart condition has taught me not to take life for granted. Living with hearing and sight loss has taught me to adapt. Having a learning disability has shown me that there are many different ways to learn and succeed. Every challenge has helped shape the person I am today.
If there’s one thing I hope people take away from my story, it’s this: disability does not mean inability.
We may take different paths. We may need different support. We may reach our goals in different ways and at different times. But our dreams are just as valid, our voices deserve to be heard, and our lives have incredible value.
That is why I’m so excited to be writing for the 22q Family Foundation.
Through these blogs, I hope to share honest conversations about living with 22q—from navigating healthcare and hidden disabilities to confidence, mental wellbeing, advocacy, work, relationships, and celebrating life’s victories, no matter how small they may seem. I want these blogs to be a place where people feel understood, supported, and reminded that they are never alone.
If you’re reading this because you have 22q, I hope you know that your story matters. Your journey matters. You are stronger than you realise, even on the days when it doesn’t feel like it.
If you’re a parent, sibling, partner, friend, teacher, or healthcare professional, thank you for wanting to learn more. Every conversation about 22q helps build a world where people with rare conditions feel more understood and accepted.
My dream is simple: to help create a future where more people recognise 22q, where hidden disabilities are better understood, and where every person living with this condition feels proud of who they are.
Because although 22q is part of my story, it isn’t the whole story.
I am a daughter.
I am a friend.
I am a published author.
I am a disability advocate.
And above all, I am someone who believes that our greatest challenges can become our greatest purpose.
Thank you for welcoming me into this wonderful community. I can’t wait to share more of my journey with you, and I hope that together we can continue raising awareness, supporting one another, and showing the world what people living with 22q are truly capable of.
With love,
Zoe Castle
Published Author | Disability Advocate | Proud member of the 22Q community