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3 March 2018

Day Six: Living with a CSF Leak

Hi <<First Name>>.

It's Saturday. The theme for today was ‘Living with a Leak’ and you can check out the key resources for the day at:

And while you’re living with a leak or enjoying a sealed life, you could be doing so in style with a CSF Leak Association branded t-shirt or hoody. 

We’re delighted that our partner, Teemill, is offering free UK postage on all items in our clothing shop this weekend:

CSF Leaker Profiles

In keeping with today’s theme, we shared three different Leaker Profiles instead of the usual two.  Sarah Hollands, Lisa Jamieson and Deborah Lunnon share their experiences.

Sarah is a cranial leaker whose leaker journey began suddenly with dripping fluid from her right nostril, followed by severe headaches.  She struggled to get a correct diagnosis, but finally an ENT consultant sent a sample of the fluid away for a beta transferrin test and it tested positive for CSF.   


Read Sarah's story here:

Our second leaker, Lisa, is a spinal leaker whose symptoms started with a bang one day in 2014.  During an inpatient stay undergoing many tests and confronted by the clinicians who were stumped, she met a neurologist who figured out she was suffering with a low pressure headache.  She has tried conservative treatment and dietary changes and found some success.

Read Lisa's story here:

Deborah is a spinal leak who is also one of the Charity’s trustees.  She’s been in the unfortunate position of having experienced three leaks since 2007.  Her first two leaks responded favourably to blood patches, but her third required targeted glue/blood patches. Along her journey she also discovered she has EDS and Tarlov cysts.

You can watch her talk about her journey over on our YouTube channel:
Deborah Lunnon - Life with a Cerebrospinal Fluid (CSF) Leak
We also produced this eye-catching flow diagram to document Deborah's journey. It complements her video and we are sure that it’ll be of real interest to many leakers. As you'll see, there were many ups and downs and even though she is sealed, she continues to suffer daily pain.

To read more about Deborah's journey, please visit our special 'A CSF Leaker's Journey' web page here.

Bite-sized Facts

Throughout the week, we’ve been releasing bite-sized facts. Today’s facts (and the last ones for this year's Leak Week) are:



The (friendly) competition has heated up in the last 24 hours, with ever more ingenious pictures being shared.  Let’s push this to the limit for tomorrow, the last day of Leak Week UK.  Bring it on!
 #WearBlueToo   #CSFleak   #LeakWeek   #Headache #UprightHeadache
Click here to visit our Leak Week UK webpage
Copyright © 2018 CSF Leak Association, All rights reserved.

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