In October of 2022, I felt like my head would pop and it literally did. I sprang a leak in the lining of my spine, resulting in my brain sliding down inside my skull. I was diagnosed with a CSF leak but this was only the start of an incredibly tough journey.

I was in a fortunate position in that I had resources and knowledge, which empowered me to access timely and expert diagnostic tests and surgery from a dedicated team of experts in the field.

Touching wood- I am fixed. My leak is sealed, and all of my symptoms have gone. But this is not the story for many others across the UK who are affected.

This condition affects 4 in every 100,000 people. Timely access to expert treatment is the key to the best outcome, but many areas across the UK lack CSF leak services, and patients must advocate for themselves to get help.

Suffering from a rare disease is isolating and exhausting. We need more research to provide a stronger evidence base to be able to advocate to Healthcare providers and government to provide the best care to all leakers.

A step towards this is to set up a patient registry, where one day every patients journey is counted, and outcomes are evaluated.

Building a registry takes long term commitment from a team of experts. We as a patient community can all play a part in this journey by raising the required funds to support this project.

My wing walk was cancelled due to weather 3 times, but finally I took to the air on 11th May. It was a wonderful experience, and thanks to the video not recording I have been gifted a second go 😊

Thank you to everybody who has donated to help patients affected by a CSF leak