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LEAK WEEK / Day Three

28 February 2018

Day Three: Diagnosis & Imaging

Hi <<First Name>>. The theme for Day Three was Diagnosis & Imaging, but we also joined forces with Rare Disease UK for Rare Disease Day.

Rare Disease Day is a global initiative that aims to bring together patient organisations and charities like ours, for one day a year to raise awareness for all rare diseases.

We have received even more positive feedback today and we’re absolutely delighted to hear that friends and family are becoming more aware and informed of the trials and tribulations of being a ‘leaker’. 

You can check out the key resources for Day Three here: www.csfleak.info/leakweek2018/daythree
 

New content


CSF leak diagnosis can be tricky because not all leaks appear on imaging; sometimes patients are sent for a multiple types of imaging as part of the diagnostic process. 

If you’ve got questions about the types of imaging machines used and the pros and cons of different scans, we’ve got the answers in our newly released factsheet: ‘Quick Reference Guide to Imaging Techniques for Spinal CSF Leaks’.    

We don’t have one for cranial CSF leaks yet, but it's in the pipeline, so keep tuned in to our social media channels and future emails where we’ll announce new factsheets as and when they're publoshed.
 

To download our new factsheet, please click here.
 

Leaker Profiles


Today’s volunteers for a few moments in the limelight are Robin Palmer Hosking and our very own, Polly Walker, who is also a charity Trustee. 

Robin’s leaker journey began with a traumatic head injury and a diagnosis of migraine.  A sudden worsening of his symptoms some years later raised the suspicion that he was actually suffering from a CSF leak. 

Robin has recently had a blood patch and is currently living life gently but positively.

You can read his story at: www.csfleak.info/profiles/robinpalmerhosking

Polly is what we call a ‘functional’ leaker who’s been dealing with a spontaneous spinal CSF leak for the last three years.  She's not had any invasive treatment to-date.

A long road to diagnosis led Polly to suspect connective tissue issues and bone spurs. She continues to struggle with symptoms associated with her CSF leak.

You can watch Polly's his video below:
 
Polly Walker - Life with a Cerebrospinal Fluid (CSF) Leak

Bite-sized Facts


Every day this week we’re releasing a few bite-sized facts, and today’s facts are:
 


 

#WearBlueToo


Don’t forget to keep on wearing blue this week and start some conversations with your friends and colleagues. Each day, more and more people are using our Facebook Frame and Twitter twibbon.

As it's Rare disease Day, it’s even more important to get out there wearing some blue and join our sister charities by adding  #ShowYourRare  and  #RareDiseaseDay  to all our usual hashtags:
 
 #WearBlueToo   #CSFleak   #LeakWeek   #Headache #UprightHeadache
 
Click here to visit our Leak Week UK webpage
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