Leak Week 2018

As part of Leak Week UK 2018, we ran a series of videos and stories looking at what it’s like to live life with a CSF leak.

On the penultimate day of Leak Week, we thought it would be interesting to look at one recurrent CSF leak sufferer’s journey, from their first leak to the present day.

Meet Deborah Lunnon. She’s experienced recurrent spinal CSF leaks since 2007. Deborah has had multiple interventions, all of which have worked for varying degrees of time, but the leaks ultimately return.

She was diagnosed with hEDS as well as a CSF leak – a combination increasingly witnessed when leaks occur spontaneously – and also has a Tarlov cyst.

Deborah also produced this fantastic flow diagram to document her journey. It complements her video and we are sure that it’ll be of real interest to many leakers.

Cambridge Rare Disease Network

Deborah also produced an excellent poster in conjunction with the CSF Leak Association for the Cambridge Rare Disease Network in 2017.

Get Involved

You can support the mission of the CSF Leak Association in many different ways. If you want to help you can find out how by following the links and deciding which method fits you best. We appreciate any help you are able to give..

Become a MemberOnline StoreDonateVolunteer