We’re looking for enthusiastic CSF Leak Association members to get involved as online forum community leaders.
If you’re interested, please drop us a line to find out more: email@example.com
Leak Week UK took place in the first week of March 2018. We spent the week raising awareness of CSF leaks, sharing stories presented by sufferers themselves and publishing new material.
We’re an organisation run by CSF leak sufferers for CSF leak sufferers, and we’re always keen to improve on what we do and to get your feedback. We’ve prepared this short survey and we’d love it if you would let us know how you felt it went, what you liked and what you feel we could do better next time:
Please click on this link to take part in the survey: www.smartsurvey.co.uk/s/4PQ6H
During Leak Week UK 2018, we published brand new guidance on sensible precautions to take after an epidural blood patch.
It covers a range of key considerations for things to avoid or consider if you’ve recently had an epidural blood patch to resolve a spinal CSF leak.
Whilst this guidance has been produced in consultation with UK neurologists, as always, we would strongly encourage you to seek and follow advice from your own doctor.
You can download your copy of the leaflet by clicking here.
We we delighted to have been able to release our brand new factsheet on imaging techniques to coincide with both Day Three of Leak Week UK and global Rare Disease Day 2018.
The guidance provides a brief overview to most of the common imaging techniques that diagnosed or suspected spinal CSF leak sufferers will encounter on their diagnostic and treatment journeys.
It was prepared with significant professional input and should answer many of the common questions that patients have about the different scans that they’re put forward for.
You can download your own copy of the publication by clicking here.
Our special thanks go to Scottish Canals for supporting this year’s Leak Week UK by lighting up the wonderful Kelpies for CSF leak awareness.
Thank also to everyone one braved the plummeting temperatures to attend and pose for this fabulous photograph [credit: Ray Michael].
You can read more about Leak Week UK 2018 here: www.csfleak.info/leakweek2018
After many months of planning, Leak Week UK has commenced. We’ve got a bumper week of CSF leak-related activity ahead.
You can read our introduction to Leak Week here: www.csfleak.info/leakweek2018/introduction
And catch up on everything that’s happened on Day One here: www.csfleak.info/leakweek2018/day-one
With a little under three weeks to go, we wanted to tell you all a little bit more about what we have planned for Leak Week UK 2018.
While we don’t want to spoil the surprise and reveal everything in advance, look out for an active week on social media, brimming with facts, information and new resources. You’ll hear from a few new faces, and some old ones too!
As we’re an open organisation run by CSF leak sufferers for CSF leak sufferers, we’ll be announcing new ways to get involved and participate in the work that we’re doing. We’ll be providing an update on recent exciting progress made with our brand new Medical Advisory Committee. And much more.
We’re really excited about this year’s Leak Week. There’s going to be a lot going on from our side, but more than anything, we’d love to have you involved and helping raise awareness of cerebrospinal fluid leaks.
We appreciate that not everyone has the time or ability to help out regularly, but every little really does help and, collaboratively, we can made a huge difference.
Leak Week UK also coincides with global Rare Disease Day and, being a member of Rare Disease UK, we’ll also be linking in with a number of wider initiatives aimed at furthering awareness and care for all rare disease sufferers across the country.
You can keep up-to-date on what we’re up to during Leak Week at our main Leak Week 2018 webpage here: www.csfleak.info/leakweek2018
If you’ve got a Facebook, Twitter or Instagram account, why not use the graphics below for your profile and banner images for the duration of Leak Week? It’s a great way to spread awareness and get the message across. Facebook shows you how to do that here.
If you’re posting and sharing on social media in the run up to and during Leak Week, be sure to use the following hashtags to help the message spread:
#LeakWeek #CSFleak #RareDiseaseDay
The Mayo Clinic has published an interesting overview of CSF leaks in its September 2017 edition of the Mayo Clinic Health Letter, entitled ‘Headaches and Spinal Fluid Leaks – An Emerging Problem’.
“You’ve had headaches for years. You usually start the day fine, but by lunchtime, the pressure-like pain has begun and is growing in intensity. You’ve sought out plenty of treatment options, but nothing has truly helped. At this point, you’re trying to live with the pain as best you can by taking medications and reducing stress.
Headaches come in a variety of types — such as migraine, tension or cluster headaches — with a variety of characteristics. A lesser known cause of headache pain occurs with low levels of cerebrospinal fluid — a fluid that surrounds, cushions and protects the brain and spinal cord. Low fluid levels can be caused by a temporary leak that occurs when the membrane holding the fluid (dura) is punctured, such as after a lumbar puncture, during surgery or with an epidural injection to numb part of the body.
But cerebrospinal fluid (CSF) leaks also can occur spontaneously, typically along the spinal column, and aren’t always temporary…”
You can download a copy of the article and read the full text by clicking below:Mayo Clinic Health Letter - Vol.35 No.9 (Sept 2017)