XLH is a rare metabolic disorder with lifelong health issues, which until recently was poorly understood.

XLH UK supports the UK community of patients and their families; organising events, raising awareness and supporting vital research into the multiple aspects of the condition. We also advocate for the development of new treatments and standards so that everyone with XLH can get their best care.

My own experience of XLH began at around 18 months old, and I was around 5 when I was given an XLH diagnosis.

XLH UK was of great help to my parents, allowing them to find out more information about my condition and how it may affect me in the future. More recently during the pandemic, I became a lot more focused on how XLH affected me, and how it could affect me in the future. I developed a very negative mindset about it, convinced I was destined to be confined to a wheelchair by 35, and still in some sort of denial about my condition which led to self-sabotaging behaviours like skipping medications and not using things like orthotics and ignoring advice from physios.

Given we were in lockdown, I had a lot of time to dwell on things, and ended up becoming a little bit obsessed with all the things that could possibly go wrong, not helped by my poor experience of transitioning from paediatric to adult care immediately prior to lockdown. It was then that I revisited XLH UK, and discovered the support that they had available for patients and their families, an extensive list of specialist consultants by area, the ongoing research they were part of, and the information they shared about clinical trials.

Without XLH UK I would still be under the care of a doctor with no idea of my condition, that would google things in front of me, and I would've had to fight a whole lot harder to be prescribed the newly approved medication Burosumab - a drug that actually treats the issue and not just the symptoms.

Although running the Lisbon Marathon is a personal endeavor, I would like to use this as an opportunity to raise both funds and awareness for a charity that has made such a difference to not only my life, but others across the country with XLH.