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
We’re delighted to announce that we now have our own Instagram account to compliment our exiting active and popular Facebook and Twitter social media streams.
You can follow us on Instagram here: www.instagram.com/csfleakassociation
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
Click to download a full size copy for sharing.
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.
Click to download image. You can use it as a temporary profile picture in Facebook or Twitter. It’ll probably work with other social media platforms too.
Click to download image. This one is ideal for using as a Facebook profile banner.
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
Issue No.7, the 2017 winter edition of our quarterly newsletter, Leaker Life, is out now.
Download your copy here: mailing list and newsletter
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)
Measuring lumbar puncture opening pressure is common practice during spontaneous CSF leak and intracranial hypertension investigation and diagnosis. Less common, but still widely used at some institutions is the practice of looking out for low intracranial pressure via ICP monitoring.
Both confirmed and potential CSF leak sufferers often query how pressure is measured, the differences between opening pressure and intracranial pressure recording, and what ranges constitute normal, low and high pressure. In response, we’ve produced a CSF leak-specific factsheet.
Our updated factsheet explores the key ins/outs of measuring opening pressure by lumbar puncture and provides details on the common pressure ranges in tabulated form. Also covered are the basics of CSF production and absorption.
We have updated the factsheet in response to feedback and also referenced a number of new and additional journal articles, including two important publications which confirm that ‘normal’ opening pressure is not an uncommon occurrence with spontaneous CSF leaks.
Download the factsheet here: Measuring Opening Pressure & Intracranial Pressure
CSF Leak Association wristbands are a great way to raise awareness of both cerebrospinal fluid leaks and the charity itself.
CSF Leak Association Wristband
All of our members receive a free wristband in their welcome pack when they join or renew their subscription, however we’re thrilled to now be able to offer additional wristbands for sale on their own.
Shipping is currently free for UK orders; we ship to a range of other countries for a small charge. You can buy wristbands individually or in packs of four. If you’re after more than three, packs of four offer better value.
You can purchase wristbands via our website’s shop section: www.csfleak.info/shop
We’re thrilled to announce the publication of our latest infographic: Upright Headache? Think CSF Leak!
The publication, produced in consultation with NHS neurologists Dr Simon Ellis and Dr Manjit Matharu, is designed to be printed off at both A3 and A4 size; it is ideal for use as a leaflet or poster, which can easily be passed on to friends and family, or given to your GP or other healthcare provider to display in their surgery or office.
Printed copies will be included in our members’ welcome pack from late June 2017 onward. You can download the infographic in PDF format for printing at home by clicking here.
The CSF Leak Association’s Annual General Meeting (AGM) will be held on Tuesday 2nd May 2017 at our registered office.
All of our members are welcome to attend, either in person of via Skype (slots are limited – advanced booking required). If you unable to attend, you may opt to vote on resolutions by proxy. Instructions are provided in the proxy vote form.
An agenda, background papers and proxy voting forms for the AGM are available by clicking on the links below (login required):
Members can also download these documents and find out more information on the AGM or becoming a trustee via our online membership system (login required): www.csfleak.info/members/agm
Please email us at secretary@csfleak.info as soon as possible if:
If you encounter any issues accessing the documents or have any questions relating to the AGM, please contact us at: secretary@csfleak.info
The first ever spinal cerebrospinal fluid (CSF) leak awareness week is taking place this week, between 26 February and 4 March 2017.
The event is being spearheaded by the Spinal CSF Leak Foundation, but has received global support and will appeal to those with an interest in CSF leaks around the world.
Amongst the events being held, of particular interest to our members will be three LIVE Q&A sessions on 1st, 2nd and 3rd March, featuring top experts in the world of CSF leaks: Dr Wouter Schievink, Dr Peter Kranz and Dr Ian Carroll.
Why not use this graphic as your social media profile picture for Leak Week?
The sessions will be hosted on the Spinal CSF Leak Foundation’s Facebook page and are not to be missed. No sign-up is necessary; just login to Facebook, navigate your way to their page and join in!
For our members in the UK, Ireland and some other European areas, the live sessions will be at 7PM / 19:00 GMT.
Find out more about Leak Week 2017 here: www.spinalcsfleak.org/leak-week-2017
It would be great if our members could join us in raising awareness of spinal cerebrospinal fluid leaks during Leak Week 2017 by drawing droplets on your hand, arm or face.
Once you’ve got your work of art completed, take a quick picture of it and share it via social media, with the hash tag: #leakweek …and encourage your friends and family to do the same!
The blue drop represents the CSF Leak Association
The purple drop represents the Spinal CSF Leak Foundation
Please spread the Leak Week 2017 message on social media by using the following hash tags:
#LEAKWEEK #UPRIGHTHEADACHE #CSFLEAK