Stories

Lymphatic malformations are often misunderstood—and for many, the journey to diagnosis and care can be complex.

During Awareness Month, we’re sharing patient stories to bring greater visibility to isolated LMs and complex lymphatic anomalies, helping others better understand the impact these conditions have on daily life.

“I’ve Got Big Goals” – Living Life on My Terms

If I had to describe myself in three words, I’d say: different, intelligent, and aware. I’ve always known I’m a bit different—but honestly, that’s never really bothered me.

Most days, I’m either at work or college, then I’m out with my mates or working on business ideas. I’ve always been into how businesses run, so me and a friend spend a lot of time brainstorming ideas. That, and socialising—pubs, gym, even seated kickboxing. Just normal stuff, really.

Growing Up

I realised pretty early on that I was different. The wheelchair made that obvious, along with all the hospital appointments. But I just accepted it.  I don’t actually remember being unwell as a kid. My only real bad memory of being in hospital is the pain I had after surgery on my leg. I think I was around 8.  My best memory is being allowed to crawl around the hospital wards at night hiding from the nurses and playing games with my mum.  

School was fairly normal. My GLA didn’t really hold me back. Physical stuff could be a bit harder, but I always found a way to adapt. I’d rather be involved than sit it out.

The Wheelchair & Independence

I’ve been a full time wheelchair user since I was 5. Using a wheelchair doesn’t bother me at all. I don’t even remember walking, even though my parents have videos of me doing it.

One thing that does get annoying is assumptions. People see the chair and sometimes think there’s something wrong mentally, which isn’t the case at all.

The biggest game-changer for me was getting my driving licence at 17. I’ve got an adapted car now, and that freedom is unreal. That’s what independence means to me—being able to just get on and do things yourself.

Health & Treatment

I’ve been on treatment – Sirolimus - for years, but you just get used to it. It’s part of life.  It can be a bit annoying when I’m away with friends trying to remember to take my meds but I know it’s important - I do my best.

I don’t spend much time thinking about my condition. If something comes up, I deal with it. There’s no point stressing over things I can’t control. I’d rather focus on solving problems and moving forward.

When things get tough health-wise, I distract myself—mostly by focusing on business ideas and goals. That’s where my energy goes.

Passion & Mindset

Right now, I’m focused on achieving my goals and building financial freedom. I’ve got big plans—multiple successful businesses, working for myself, and being in a position to help my family and friends.

I love sport too, especially boxing. It’s the intensity, the energy, the skill—it just clicks with me.

I do think my condition has shaped who I am, but only partly. It’s made me mature earlier in some ways and probably pushed me towards the mindset I’ve got now.

Friends & Social Life

I’ve been lucky with friendships. I’ve got a small group—about six really close mates I’ve grown up with—and they’ve always been solid. Proper supportive.

Most people don’t fully understand my condition, and to be fair, it’s hard to explain. Usually, I just say I have a complex lymphatic condition that has led to lower limb mobility issues.  

Looking Ahead

I think about the future all the time—but not in a negative way. I don’t worry about my health because I can’t control it. What I can control is what I do with my life.

The only thing that really worries me is not reaching my goals and not having financial security as I get older.

What I’m most looking forward to? Business success—and being able to inspire other people through it.

Family & What Matters

If I could say one thing to my parents, it would just be thank you. For everything—for letting me live my life and always believing in me.

Advice

To other young people with a complex lymphatic anomaly: don’t let it define you.

And to parents—let your kids be kids. Their dreams don’t have to end. They might just look a bit different.

I’ve got things I want to achieve. That’s what drives me. The rest of it? It’s just part of the journey.