CSF Leak Association
CSF Leaks: Disabling, Treatable, Often Missed — Let’s Change That
Cerebrospinal fluid (CSF) leaks cause severe, often life-altering headaches and neurological symptoms, especially orthostatic headache — pain that worsens when upright. Despite being treatable, CSF leaks are frequently misdiagnosed, leading to prolonged suffering and disability.
We’re a UK charity supporting those affected by CSF leaks. Our mission is to improve diagnosis, treatment, support, and prevention through education and collaboration with leading clinicians.
We published the UK consensus guideline for spontaneous intracranial hypotension (SIH) to improve care and reduce harm. This year, we’ve created infographics for frontline healthcare professionals — practical tools to aid recognition and referral.
In primary care, rare conditions are hard to spot. You may only see one CSF leak patient in your career — but for that person, your awareness could be life-changing.
If you visit our stand and find yourself thinking, “I wonder…” — that moment could lead to the right diagnosis and a full recovery.
Early recognition and referral are key. Thank you for being curious.