18 December 2016 CSF Leak Association 0

CSF Leak Android App

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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

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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

13 October 2016 CSF Leak Association 0

Measuring Opening Pressure on Lumbar Puncture

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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

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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

 

25 August 2016 CSF Leak Association 0

Tough Mudder North West

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Frances-Kate-Tough-Mudder-2016

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.

23 August 2016 CSF Leak Association 0

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

7 August 2016 CSF Leak Association 0

Hollyoaks’ Duncan James suffers CSF Leak

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Duncan James, of UK pop band Blue and now popular TV soap Hollyoaks, talks about his recent struggles with a cerebrospinal fluid leak following surgery.

Leaks can be spontaneous, iatrogenic or follow trauma. Conservative estimates show that spontaneous leaks alone affect 5 in 100,000 people, while many more than that develop them following surgery, lumbar punctures, epidurals etc.

CSF leaks are not as rare as many believe.

You can read the story here: www.mirror.co.uk/3am/celebrity-news/duncan-james-spinal-fluid-coming-8577372

4 June 2016 CSF Leak Association 0

CSF Leak Association Shop & Merchandise

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We are very pleased to announce that the CSF Leak Association, in partnership with Teemill, now has an online shop, where you can buy a range of CSF Leak Association-branded clothing and gifts.

Unlike many similar bespoke online clothing platforms, Teemill is located in the UK, printing is carried out in the UK, and items ship from the UK, all within a matter of days. Teemill also ships internationally at very reasonable rates. The quality of the garments is all very good, and production is ethical, low carbon and organic.

For every item sold, the CSF Leak Association will receive a proportion of the profit to go towards the work that we are doing to support sufferers and progress our aims. As an example, for every t-shirt sold at £19, £4.50 will come to the Association; so you help raise the profile of CSF leaks and help us fundraise at the same time!

To visit our online shop, please click on ‘shop’ in the main menu, or click here: www.csfleak.info/shop

 

23 May 2016 CSF Leak Association 0

The Kilt Ride 2016

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Kilt Ride Flyer

The time has flown by and the Kilt Ride 2016 – the world’s first ever large-scale awareness and fundraising event for cerebrospinal fluid (CSF) leaks – is almost upon us. This fantastic two-day event, organised by Ray Michael for Saturday 28th and Sunday 29th May 2016, will see up to 100 tartan-clad bikers travel around Scotland, from the Borders to the Highlands, in support of CSF leaks.

The convoy will depart the Leadburn Inn, Midlothian, at 09:00 to the sound of bagpipes and the taste of bacon butties, making its way to the second rendezvous point at Tesco Extra Perth, Edinburgh Road for 11:30. Thereafter, it will make its way through Fife, Perthshire through the Spittal of Glensheeand and into the Cairngorms. The overnight  stop will be at Dores, on the banks of Loch Ness, before travelling back south the following day, via Glen Coe and Bannockburn.

We are sure that the event will be a roaring success and would like to thank Ray for his dedication and support, and for all of the hard work that he has put in over the past 6 months to make it a reality. We would also like to thank The Dores Inn, the Leadburn Inn, Saltire Motorcycles and Alba Customs for supporting the event. Event t-shirts and raffle tickets (with some fantastic biker-related prizes) will be available to buy at the Dores Inn on the Saturday evening.

If you would like to view more information on the event itself, please visit the dedicated Facebook page.

If you would like to support the event with a donation, you can do so via the event page, by visiting our donations portal on TotalGiving or, if you have a UK mobile phone, by texting: LEAK00 £5 to 70070.

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