Skip to main content

CSF Leak Association

CSF Leak Association banner

Charity description

CSF Leak Association logo
We are a Scottish Charitable Incorporated Organisation working across the UK to raise awareness of cerebrospinal fluid (CSF) leaks and aiming to provide support and advice for sufferers, their families and supporters, and a resource for the medical profession.

A CSF leak is a serious and often incapacitating medical condition where a hole forms in the membrane that contains the fluid surrounding the brain and spinal cord. It can occur in the head or spine as result of trauma, surgery, an underlying disorder or spontaneously.

When fluid leaks out, pressure and volume reduces in the skull which allows the brain to sag. As are result, sufferers often experience severe head pain, pressure, visual disturbance, hearing impairment, tinnitus, spasms, seizures and a range of other symptoms.

Research shows that at least 5 in 100,000 people are affected by spontaneous CSF leaks, with many more suffering from iatrogenic leaks. The condition is generally underdiagnosed, with misdiagnosis of migraine, sinusitis, NDPH and other headache disorders being common.

Our mission is to promote awareness of CSF Leaks, to support better access to much needed help, support and information and help to improve access to fast, appropriate treatment and care.

Charity No: SC046319

Find out more


MyDonate is not responsible for the content fundraisers post on their pages, but if you see something you feel is offensive or inappropriate, please let us know