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LEAK WEEK / Day Five

2 March 2018

Day Five: Aftercare

Hi <<First Name>>.

It's Friday. We've reached the end of the working week, but we've still got two days left of Leak Week UK 2018.

The theme for today was ‘Aftercare’ and you can check out the key resources for Day Five at:

New content

We’re acutely aware of the lack of advice for those of us recovering from a CSF leak and this is especially lacking when it comes to sensible steps to take after having an epidural blood patch.  

To meet this need, we produced a new resource in the form of a postcard entitled ‘If in doubt, Wait it out!’ in consultation with doctors on our Medical Advisory Committee.  It highlights some of the key precautions to consider after a patch, but you must still always consult with your doctor.

It is worth noting that blood patches can fail for unknown reasons regardless of how ‘good’ you’ve been, so following these precautions can be no guarantee to success.  There is still so much to learn about leaks and patches, but by following this advice you’re doing the best you can to promote healing.

Our newly-updated collection of resources for aftercare, including general precautions, rebound high intracranial pressure, nutrition and physiotherapy is available at:

To download a PDF of our blood patch postcard for printing, please click here.
To download a lower-resolution copy for sharing on social media, please click here.

Leaker Profiles

Flying the flag of awareness today, we have Rachael Ebeling and Pete Marnick. They've both been sharing their experience of CSF leaks in our Life with a CSF Leak profiles.

Rachael’s unlucky start to her leaker journey began with a simple chesty cough, proving that spontaneous spinal leaks can happen in the most seemingly benign ways.  She has had two epidural blood patches and although her symptoms have improved she still suffers symptoms.

Read Rachael's story here:

High flyer Pete originally developed a large CSF leak as a complication of spinal surgery.  This leak was initially treated and thought to be successful.  

Unfortunately Pete suffered persistent headaches that, over time, appeared to have a postural element.  These days he suffers daily with symptoms of a leak and cannot work, but tries his best to live as well as he can.

You can watch him talk about this story below:
Pete Marnick - Life with a Cerebrospinal Fluid (CSF) Leak

Support from our Friends

We were delighted that EDS UK advertised our Leak Week campaign in their weekly email newsletter this week. In particular, they included coverage of CSF leak and EDS sufferer, Robin Palmer Hosking, who also told his story of blood patching yesterday's Leak Week activities.

We are also extremely grateful for the support and exposure given to us by Rare Disease UK, who have been retweeting of tweets and promoting our #LeakWeek through their own channel throughout the week.

And it goes without saying that we are appreciate all of the other likes, shares, subscribes, tweets and retweets that everyone out there in cyber space has been giving us since everything began on Monday...we couldn't do it without you!

Bite-sized Facts

Throughout the week we’re releasing bite-sized facts, and today’s facts are:



We’re nearly there with our #WearBlueToo campaign: just a few days more, so go grab something blue and share your snaps!

You all continue to amaze us with your positive attitude and good humour. It continues to be a privilege to work on your behalf.
 #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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