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.
#wearbluetoo
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!
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 clicking here.
CSF Leak Facts
The CSF Leak Facts attracted a great deal of attention far and wide. You can view it yourself by clicking here.