3 June 2017 CSF Leak Association 0

Upright Headache? Think CSF Leak!

Standard

We’re thrilled to announce the publication of our latest infographic: Upright Headache? Think CSF Leak!

Upright Headache Think CSF Leak (PNG)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.

19 April 2017 CSF Leak Association 0

Annual General Meeting 2017

Standard

AGM Banner

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:

  • You would like to attend the meeting in person, so that we can provide directions to our registered office;
  • You would like to attend the meeting via Skype, so we can book you a slot and provide you with instructions for dialing in;
  • You wish to vote by proxy (please include a completed proxy vote form);
  • You are interested in becoming a trustee and have not already expressed an interest;
  • You wish to raise any business at the AGM.

If you encounter any issues accessing the documents or have any questions relating to the AGM, please contact us at: secretary@csfleak.info

27 February 2017 CSF Leak Association 0

Leak Week 2017

Standard

Leak Week 2017

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.

leakweek-profile-pic-uk-version-2

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

11 January 2017 CSF Leak Association 0

The CSF Leak Association is now open for membership!

Standard

We are absolutely thrilled to announce that, after months of hard work by our dedicated band of volunteers, the CSF Leak Association is now open for membership.

As a small charity with big ambitions, our aim is to provide information and support to all sufferers of cerebrospinal fluid (CSF) leaks, their family, friends and medical advisers, as well as securing clear and consistent patient pathways for the diagnosis and treatment of CSF leaks.

csf-leak-association-membershipAs a membership organisation, we rely heavily on the fantastic support and generous encouragement of our supporters in the work that we do. Without this dedicated help, we could not function and would be unable to continue to raise awareness of cerebrospinal fluid leaks and push for positive change.

Whether you’re an individual or an organisation, based in the UK or further afield, if you share our aims and objectives and benefit from the work that we do, why not join us and get involved?

You can join us online or by post. Find out more here: www.csfleak.info/membership

24 December 2016 CSF Leak Association 0

Leaker Life Newsletter – Winter 2016

Standard

Leaker Life Banner

The winter edition of our quarterly newsletter, Leaker Life, is out now.

Download your copy here: mailing list and newsletter

18 December 2016 CSF Leak Association 0

CSF Leak Android App

Standard

Calling all Android Mobile Phone and Tablet owners!

We are delighted to announce the release of our brand new Android app for CSF leakers. It’s absolutely free and available to download from the Google Play store.csf-leak-association-android-app-advert

The app provides easy access to key information and resources about CSF leaks, all at the click of a button or tap on a screen!

You can access information about cranial and spinal CSF leaks, and view a list of must-read medical journal articles, all off-line; ideal for use during an appointment with your doctor or when explaining things to friends and family.

View our global map of CSF leakers and add/edit a pin for yourself, search for doctors with some CSF leak experience near you (aimed at EU residents), or bring up a copy of our medical accommodations cards whenever you need it.

android-app-screenshotThe app is brand new and is being updated regularly with new content, so please make sure that you select its ‘auto update content’ setting. If you have any ideas or suggestions for the app, please drop us a line.

To get a copy of the app, search for ‘CSF Leak’ in the Google Play app store, or point your device’s browser to: www.tinyurl.com/csfleakapp

NB. If you already have a map pin on our Global CSF Leaker Map, please go to the pin via the mobile app, make a note of the number in the pop-up window (e.g. #250) and email us at webmaster@csfleak.info with your Android account email address; this will enable us to link your pin with your CSF Leak Companion App.

18 November 2016 CSF Leak Association 0

Cerebrospinal Fluid Leaks: An Overview

Standard

We are delighted to announce the publication of Cerebrospinal Fluid Leaks: An Overview, the latest edition to our popular factsheet series. It is free to download from our website.

This new leaflet provides a valuable overview of cerebrospinal fluid (CSF) csf-leak-association-factsheet-series-advert-csf-leaks-an-overviewleaks, both cranial and spinal, and touches upon key signs and symptoms, diagnostic techniques and treatment options.

It has been produced in consultation with two UK neurologists working in the NHS: Dr Simon Ellis, a consultant neurologist at Royal Stoke University Hospital, and Dr Manjit Matharu, a consultant neurologist at the National Hospital for Neurology and Neurosurgery.

Cerebrospinal Fluid Leaks: An Overview is a must-read for both diagnosed sufferers and those who suspect that they may be suffering from a CSF leak. It is ideal for inclusion in leaflet displays or handing out as part of an awareness-raising event.

The leaflet also provides useful information for GPs, doctors working in emergency medicine, paramedics and other healthcare professionals who may not routinely encounter CSF leaks in their work, but nonetheless need to know what to look out for and how to treat them.

Download the leaflet here: Cerebrospinal Fluid Leaks - An Overview

13 October 2016 CSF Leak Association 0

Measuring Opening Pressure on Lumbar Puncture

Standard

CSF Leak Association Factsheet Series Advert - Opening Pressure on Lumbar Puncture

Measuring lumbar puncture opening pressure is common practice during CSF leak and spontaneous intracranial hypertension diagnosis.

Many confirmed or 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.

Our new 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.

The importance of using non-cutting needles for lumbar puncture procedures, in order to reduce the risk of post-dural puncture headache and persistent CSF leak, is also highlighted.

Download the factsheet here: Measuring Opening Pressure & Intracranial Pressure

16 September 2016 CSF Leak Association 0

CSF Leak Medical Accommodations Card

Standard
CSF Leak Association has created a Medical Accommodations Card - Front

Our new Medical Accommodations Card

Many CSF leak sufferers will have experienced the need to sit or lie down because of their symptoms, while being in a place where sitting or lying down was not socially acceptable, allowed or provided for. Sometimes people may formally object to you lying down somewhere because your disability is invisible.

CSF Leak Association has created a Medical Accommodations Card - Reverse

CSF leak information and advice on the reverse

The CSF Leak Association has created a new Medical Accommodations Card to try to help with such situations. The card is free to download and print off. It can be folded in half and kept in your purse or wallet. CSF Leak Association members will receive a number of professionally-printed medical accommodations cards in their welcome pack.

The card explains what a CSF leak is, what symptoms you may be experiencing and your need to sit or lie down. It can be shown to any one who may not understand your need to sit or lie down and encourage them to make allowances and provide assistance.

Please feel free to use and share:  CSF Leak Medical Accommodations Card

 

1 2 3 4 5