New Spinal CSF Leak Imaging Factsheet

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Imaging Quick Reference Factsheet FB Advert 1

Quick Reference Guide to Spinal CSF Leak Imaging Techniques

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.

 

Leak Week 2018

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Leak Week 2018 Featured Image Banner

A WEEK OF ACTIVITIES FOCUSING ON CSF LEAKS

What to expect this year.

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

 

GET INVOLVED & PLAY A PART

Five simple ways to get involved in Leak Week

 

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Click to download a full size copy for sharing.

 

SOCIAL MEDIA

Spread the word. Raise awareness.

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.

Facebook Leak Week 2018 Profile Image

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.

 

Leak Week 2018 Featured Image Banner

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

CSF Leak Association Wristbands

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CSF Leak Association wristbands are a great way to raise awareness of both cerebrospinal fluid leaks and the charity itself.

CSF Leak Wrist Band

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

Leak Week 2017

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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.

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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

The CSF Leak Association is now open for membership!

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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

Cerebrospinal Fluid Leaks: An Overview

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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

Partnership with Inspire Spinal CSF Leak Community

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We’re excited to announce today our new partnership with the Spinal CSF Leak support community. This Inspire community is an online resource developed in partnership with the Spinal CSF Leak Foundation and Inspire to help patients and caregivers affected by spinal CSF leaks share support and information.

We are pleased to be working collaboratively with the Spinal CSF Leak Foundation, a 501(c)3 non-profit health advocacy foundation based in the USA, in formally joining this established online community. This will be one of many collaborative efforts as we work together to make a difference to those suffering with CSF leaks.

As with any less common disorder, online community support is so important when there may not be others with similar issues nearby geographically.  Social support and informational support can make all the difference in improving outcomes and reducing suffering of those with leaks and their loved ones.

Our charity and the US Foundation chose Inspire for similar reasons: Inspire is designed to offer a high degree of privacy, which is important to many members, particularly those that wish to protect their information and keep things private. Unlike Facebook, anonymity is also an option. Email notifications can be customised and provide quick-links to recent discussions.

Inspire hosts other support communities and you may join as many as you wish. Some existing community members with Ehlers Danlos Syndrome are members of the Ehlers Danlos National Foundation Support Community, for example.

You can join the Inspire Spinal CSF Leak community here: www.spinalcsfleak.inspire.com