I was diagnosed with Kennedy’s Disease when I was 27. I’d just bought my first house and my parents were helping me decorate. My mum noticed my hands and arms trembling while I was up a ladder. We’d spoken about KD before, my Grandad had it, but never in detail. I first tried for a diagnosis through the NHS, but very quickly hit walls. The knowledge wasn’t there, and it became a frustrating process. I eventually went private and was referred to a neurologist who had worked with my Grandad. A couple of blood tests later, and there it was, a condition I’d lived with my whole life, finally given a name.
Looking back, the earliest symptom for me was gynecomastia. Growing up as a young boy with a noticeably large chest was confusing and hard to process, especially with no explanation. In my late teens, the hand tremors kicked in more regularly, and I’d had cramps throughout childhood, nothing that worried me at the time, but all part of the puzzle.
It’s difficult to explain what KD feels like day to day, mostly because we all only ever experience our own reality. My body is what it is, and I’ve never known any different. What I can say is that fatigue is more noticeable as I’ve gotten older (having two young kids doesn’t help), my cramps appear in odd places like my abs or shoulders, and my tremors are worse. I’m back in the gym now, and the drop in strength is obvious, but that’s life. Most people lose strength if they stop training for a few years. The difference with KD is knowing the decline won’t fully reverse, so I focus on form, not PBs.
Some things get harder, for example writing with a pen. My wrist and hands cramp up quickly. My voice tires more easily too, probably a combination of symptoms and being in a sales role where I talk all day! But importantly, it doesn’t stop me living my life.
When I was first diagnosed, I felt lost. There wasn’t much information around back then, and no one could really tell me what my future might look like. It was lonely. You’re suddenly faced with something that could be life changing, and you have no sense of how severe it will be or how quickly it will progress, all while trying to start a family. Over time, things shifted. You learn, you build networks, and the team at UCL become more than clinicians, they become the people you lean on, laugh with, and rely on. (Luca, if you’re reading this, yes, that means you.) Louie Lee has also brought something invaluable, practical reality mixed with genuine empathy.
Emotionally, KD forced me to face myself. I naturally lean towards avoidance, and in the early days I pretended it wasn’t happening. Ironically, that’s when it impacted me the most. Therapy has played a huge part in changing this. For the last five years, I’ve worked with an incredible therapist who helped me understand the value of taking things head on. KD was definitely a catalyst for that. In a strange way, it’s made me stronger, despite my body technically getting weaker each year. We all get dealt a rough hand at some point. I feel fortunate that one of mine came early enough that I could work through it.
People often ask what others misunderstand about KD, but I don’t think anyone really gets it wrong. Why would they? They haven’t lived it. What I do wish is that the condition had a more familiar name. Trying to explain it every time gets tiring. I often reference MND, not because they’re the same, but because people instantly grasp what muscle wasting conditions can mean. Rob Burrow’s incredible work has helped bring that conversation into the public space.
Becoming a trustee for KD UK was an easy decision. My kids are the main reason, they’re the absolute apples of my eye, and I’d love nothing more than for them and their future children to live in a world where KD no longer exists. As girls, they won’t be directly affected, but they could pass it on. That gives me time, purpose, and a reason to get involved. I also feel a responsibility to myself. I have an opportunity to learn as much as possible and take steps now to stay healthy. I owe that to myself and my kids.
I also think my age gives me something useful to contribute. I’m younger than the average person diagnosed, so I bring a different perspective, and I hope I can support anyone who finds themselves diagnosed earlier in life.
If there’s one thing I wish I’d had earlier, it’s knowledge. It’s natural to want to protect children from difficult things, but in reality, I’d been showing signs of KD from a young age. I wish I’d had the chance to learn about it then. And one thing that’s crucial for anyone newly diagnosed to hear, there is no set path. KD affects everyone differently. Becoming comfortable with the unknown is part of the journey.
As symptoms progress, the thing that keeps me going is simple, day by day. Life is hard for everyone right now, but the small things matter. I still get up and do school runs, I go to work, I go on holidays, I have a partner I adore, and there is joy everywhere if you allow yourself to see it. Sometimes it takes having the rug pulled from under you to notice how beautiful the sky is.
To anyone newly diagnosed, here’s what I’d say:
You’re not alone, and this does not have to define you.