In this spotlight profile we hear from Ketan, who lives with acromegaly and is a member of our Lived Experience Committee.
My Story
Ever notice how going through something tough can give you this unexpected urge to help others who are just starting that journey? Volunteering often springs from that exact spot – turning your own “been there, done that” moments into a force for good! I started thinking, “How can I give a little back and get more involved?” Then, as if by magic, the opportunity to join their new Lived Experience Committee (LEC) arrived. I was genuinely thrilled at the prospect because I’ve learned first-hand just how important it is for the voices of people who actually live with these conditions to be heard loud and clear.
In all honesty, living with a pituitary condition (or caring for someone who does) can feel like being dropped into the middle of a maze blindfolded. You’re dealing with a whirlwind of doctor’s appointments, baffling medical jargon, emotional ups and downs, and figuring out a whole new ‘normal’ for daily life. It can feel pretty scary and incredibly lonely at times.
During my own “what on earth is happening?” phase, The Pituitary Foundation was a lifeline. They offer fantastic support, clear information, and perhaps most importantly, a sense of community – letting you know you’re not the only one going through this. They help people directly affected and their families too. But I reached a point where I didn’t just want to get help anymore; I wanted to be part of the help. Taking the understanding I’d gained – often the hard way – and turning it into a tool to help The Foundation improve things for everyone? That was seriously motivating. It felt like the perfect way to give back and make sure those hard-won insights weren’t wasted.
“The goal for the committee is to bring together a real mix of people – patients, family members, carers – all sharing their unique, real-world experiences.”
Before diving in, we had a chat about what the Lived Experience Committee was all about. The Foundation explained their vision: they wanted the LEC to be a key part of ensuring that everything they do truly revolves around the needs and perspectives of the people they serve. By setting up this formal group, they’re making sure there’s a proper structure to listen to, and actually use, the wisdom of those who’ve walked the walk. The goal for the committee itself is to bring together a real mix of people – patients, family members, carers – all sharing their unique, real-world experiences.
What does my volunteer role involve?
So, what do we actually do in the LEC? Our role is pretty varied and, I think, really important. We chat with The Foundation’s staff and trustees, offering our perspective. We look over patient information – things like leaflets, website pages, and guides – to make sure they’re easy to understand, genuinely helpful, and written with empathy (goodbye, scary medical jargon!). We also chip in on how support services are developed and delivered. The big idea is simple: services designed for patients should be shaped by patients.
This ‘lived experience’ angle is gold. It helps spot the little things, the potential pitfalls, or the bits of information that might be missing. It ensures that the way The Foundation communicates actually connects with the people reading it, because it reflects the practical, emotional, and day-to-day realities of these conditions, not just the clinical facts.
And you know what? Volunteering hasn’t just been about giving back; it’s been amazing for me personally, too. Being part of the committee and hearing stories from people with different pituitary conditions and facing different hurdles has massively broadened my own understanding. My own experience felt unique and, at times, isolating. But listening to others share their journeys has offered incredible new perspectives. When you gather all these different experiences together, you create something truly powerful that can genuinely shape better resources for others. That feels incredibly rewarding.
What have you enjoyed the most in your role?
Our LEC meetings have covered all sorts of ground, but I’ve particularly loved the discussions around advocacy and support. It’s been fascinating to reflect on the emotional side of things – the common worries we all shared, the kind of practical, non-medical advice that would have been a game-changer back then. We had a really lively debate about how The Foundation could reach more people using different social media and online platforms, considering how everyone from teenagers to grandparents gets their information these days.
I’m genuinely excited about where we can take this. Knowing that the conversations we’re having now could lead to resources that offer real, practical help to someone feeling lost or overwhelmed in the future… well, that’s a fantastic reminder of why the LEC is so important.
To anyone thinking of volunteering…
Based on all this, my message is simple: give volunteering a try! The benefits ripple out way beyond the organisation itself. It’s a brilliant way to grow as a person, maybe pick up some new skills (hello, teamwork and feedback!), and boost your confidence. Plus, it connects you with awesome, passionate people who care about the same things you do – say goodbye to feeling isolated and hello to belonging!
Most importantly, it’s a real, hands-on way to make a difference. Seeing your time and insights actually lead to positive change? That’s incredibly motivating. It lets you turn your own experiences, good or bad, into something constructive and contribute to something bigger than yourself. What’s not to love about that?
