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LEAK WEEK / Day Seven

4 March 2018

Day Seven: The Week That Was

Hi <<First Name>>.

It's Sunday.  We made it!

It's final day of Leak Week UK 2018.

The theme for today's activity was ‘About the CSF Leak Association’ and you can check out the key resources for Day Seven at: 

www.csfleak.info/leakweek2018/dayseven
 

The CSF Leak Association


We’re a charity for CSF leak sufferers run by people directly affected by CSF leaks.  The reality is that although leaks are more common than most of the medical profession apprecaite, we are still a relatively small group of patients. 

We’re a small charity with big ideas and even bigger goals and in order to keep the pressure on and deliver our goals, we need more volunteers. 

We will be advertising specific volunteer roles on our website in the future, but we have plans to form a number of focus groups to help us direct our work and review future publications.

Expressions of interest are welcome from current leakers, sealed leakers, carers, family members and other interested parties. 

The time required won’t be too onerous and since we are ourselves leakers we will understand the need to be flexible.

Please visit www.csfleak.info/focusgroups to read more and register your interest.  
 

We don't receive large grants or donations and rely on the goodwill and generous donations of the general public to keep doing what we're doing. 

If you've found the information, resources and publications of use or interest, please consider making a small donation to help us keep doing what we're doing. Thank you.
 
Click here to make a small donation today
 

Charity Shop
 

Don’t forget the free UK postage offer with our partner, Teemill, expires tonight. Treat yourself or a loved one to a comfortable and stylish piece of clothing that supports the work of the charity, while also doing your bit to raise awareness. Get your dose of retail therapy at www.csfleak.info/clothing
 
 

Medical Advisory Committee (MAC)


A lot of work has gone on behind the scenes to gather motivated medical professionals with an interest in CSF leaks together to form the MAC. 

The MAC’s membership includes specialists from neurology, neurosurgery, anaesthetics and radiology as well as a patient representative and a charity trustee, who acts as secretary. 

You can learn more about the makeup of the MAC at: www.csfleak.info/mac

We’re delighted to share with you a summary of what was discussed at the inaugural meeting of the committee earlier this year in January at:

www.csfleak.info/category/news/medical-advisory-committee-news

As you can see, the MAC has their work cut out for them!
 

CSF Leaker Profiles


Last but never least, John Jackson and Leah Smith took to the stage today in our last instalment of the Leaker Profile and Life with a CSF Leak video.

John featured in a video earlier in the week, but returned today to talk a little more about his journey. He experienced a spontaneous leak that may be related to an incident while surfing. 

He was successfully treated with glue patches but his issues returned with a rare presentation of a leak – a CSF venous fistula. He has surgery for this, thought to be the first of its kind in the UK.

Just this week, he underwent more surgery in an attempt to fix the ongoing leak. You can read his story at: www.csfleak.info/profiles/johnjackson
 

 

Leah’s leak journey started with an ill-fated diagnostic lumber puncture last year. 

Conservative measures failed to ease her symptoms and she faced repeated obstacles to obtaining definitive treatment of her leak. 

She’s had three blood patches, only one of which was partially effective, and struggles daily with ongoing symptoms. You can see her video below.
 
Leah Smith - Life with a Cerebrospinal Fluid (CSF) Leak

Bite-sized Facts


Throughout the week, we’ve been releasing bite-sized facts. We've prepared this special Leak Week UK bite-sized facts poster, which you can download, print off and use.

 
To download a PDF version, please click here.
 

#WearBlueToo


The CSF Leak Association would be nowhere without your support.  All week we’ve been especially impressed with how you took #WearBlueToo to your heart and shared your experiences and photos on social media.  Your support meant that Leak Week was a resounding success.

We wish to also applaud the distinguished and laudable manner in which the leaker community welcomes newly diagnosed sufferers of CSF leaks, recognising that many new leakers can be struggling and vulnerable like never before in their lives. 

So do yourself a favour and take a moment to feel proud of yourself and the leaker community!  Can you spot someone you know in our Leak Week #WearBlueToo montage?
 
THANK YOU!
 
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