Today sees the launch of Leak Week UK; a week packed full of CSF leak information sharing and awareness raising. Throughout the next seven days, expect to learn new facts, download new advice & guidance and hear some real life experiences of what it is like to live with a CSF leak.
Look out for the stunning Kelpies – the world’s biggest equine sculptures – lighting up in blue this evening for Leak Week and kicking things off in style. Blue was first adopted as the colour for CSF leak awareness in the UK back in 2014, so each year we now encourage as many people as possible to wear blue during Leak Week to help spread awareness.
It’d be great if you could wear blue to work or while out and about and make it a talking point. Tell your friends, family, and colleagues why you’re wearing it and explain a little bit about leaks. Grab a photo and post it to the CSF Leak Association Facebook page, tweet a copy to us on Twitter and share it widely across social media!
And if our own awareness week wasn’t enough, on Wednesday we join forces with Rare Disease UK for global Rare Disease Day 2018. We’d love it if you’d help us to fly the flag for both Rare Disease and CSF Leak sufferers. Cumulatively, we can all make a difference!
Themes for Leak Week UK 2018
The core theme for this year’s Leak Week is Life with a CSF leak.
We want to give a voice to CSF leak sufferers across the country and enable them to tell their own story. We want to show what having a CSF leak means for real people on a daily basis, and how it affects their lives. Throughout the week, you’ll hear from different ‘Leakers’ talking about their own personal journey.
Here’s a little more about what to expect each day:
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
We’ll send out a daily email every evening summarising what’s been happening during the day, so stay tuned.
For now, here’s a little taster of what’s to come today…