Life with a CSF Leak

The core theme for the week was ‘Life with a CSF leak’, with each day focusing on a different aspect of living with a CSF leak. If you missed anything, want to catch up, or just revisit our animation, the facts, materials, and real leaker life videos and stories, you can do so by clicking on the links below.

Monday / What is a leak?
Tuesday / Symptoms
Wednesday / Diagnosis (plus Rare Disease Day)
Thursday / Treatment
Friday / Aftercare
Saturday / Life with a CSF leak
Sunday / About the CSF leak Association

Here are some of our highlights of Leak Week.

Kilt Riders

We were over the moon to see the Kilt Riders photographed alongside the world famous Kelpies, illuminated blue for the evening of 26th February to kick the week off and raise awareness of CSF leaks.

A group of people at the Kilt Ride event wearing CSF Leak Association shirts and holding a banner.


We asked you to #wearbluetoo to raise awareness, and boy, did you rise to the challenge! We saw blue hair, nails, glasses, not to mention a whole array of blue garments, and brilliantly crafted outfits.

We can’t let the opportunity pass without thanking each and every one of you for participating, for showing great humour, spirit, and creativity, even when suffering.

An extra special mention must be made to John Jackson, posing fresh out of surgery; Leaky Leah for her ingenious and hilarious creations, and of course, our very own Chairman, David Baldwin, for braving the Beast of the East for a chilly #wearbluetoo shot!

A smiling man wearing a hat, sunglasses, and a CSF Leak Association shirt, and flip flops in the snow outside.
David Baldwin
A surprised woman with curlers in her hair in the bathroom.
Leaky Leah
A man lying in bed with a blue wig, sunglasses, and making the rock-on hand symbol.
John Jackson

Leaker Stories

A number of leakers shared their stories by video and text. They did an outstanding job of raising awareness of CSF leaks, whilst hopefully assuring other leakers that they are not alone in their battles, and that hope is well and truly out there. You can read and watch our patient stories by visiting our website or by clicking here.

A female CSF leaker with a quote "As the weeks went by, I couldn't look after my son.".
A portrait of a man and a quote "I spontaneously developed even more symptoms, including 'end of days' head pain...".

CSF Leak Facts

The CSF Leak Facts attracted a great deal of attention far and wide. You can download your own copy to print and share by clicking here.

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..

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