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.

 

Blue Kelpies for Leak Week UK

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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

Leak Week UK 2018: Day One

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CSF Leak Association Leak Week 2018

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

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

Leaker Life Newsletter – Winter 2016

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

Download your copy here: mailing list and newsletter

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

CSF Leak Medical Accommodations Card

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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

 

Tough Mudder North West

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Frances (right) and Kate (centre) after a recent ‘warm-up’ event.

On September 11th 2016, Frances Todd and Kate Hubbard (right and centre respectively in the photograph) will be taking on the unforgiving challenge of TOUGH MUDDER North West in order to raise much needed funds, awareness and support for the CSF Leak Association.

They are embarking on this demanding obstacle course spanning 13 miles cross country, because it is a cause very close to their hearts. Kate’s Mum has suffered with a CSF Leak for the past 6 years, she has travelled to the States to receive treatment and is committed to helping others with the condition through her role on the CSF Leak Association Board of Trustees.

It’s not going to be easy for the Tough Mudders; the challenge features a mind numbing combination of new obstacles, unrelenting terrain and A LOT of mud!

You can support Frances and Kate and help them reach their fundraising target here: www.totalgiving.co.uk/mypage/csfleaktoughmudder

NB. Are you thinking of raising money for the CSF Leak Association? Why not visit our fundraising page and also drop us a line to let us know, so that we can support you and help you advertise the event.