About us

A UK registered charity, working to improve understanding and treatment of cerebrospinal fluid (CSF) leaks. Crucially they are treatable if the symptoms are recognised and appropriate action taken. Our vision is for everyone to be treated quickly to give the greatest chance of a full recovery.

CSF leaks cause a loss of the fluid that surrounds, cushions and cleanses the brain and spine, resulting in crippling pain and other disabling symptoms which intensify when in an upright position. People with a CSF leak spend most of their time lying flat, unable to participate in any kind of normal life. Once active people suddenly find themselves isolated, unable to work, care for themselves or their family. The impact on the whole family is devastating and causes a high mental health burden. Too often it goes undiagnosed causing unnecessary suffering and the possibility of additional serious complications developing. Being misdiagnosed with conditions such as migraine or dementia can lead to inappropriate or harmful treatments.

We are currently working hard with a group of dedicated specialists to create clinical guidelines which will transform the patient journey but more needs to be done to prevent more people suffering.

The CSF Leak Association is run solely by volunteers, meaning every penny goes towards increasing understanding, providing support for patients and offering a trustworthy resource for the medical profession. We appreciate any donations you can make, every penny makes a big difference to the charity and patients. Thank you for your support. For more information visit csfleak.uk 

The CSF Leak Association is a Scottish Charitable Incorporated Organisation (Charity No. SC046319) promoting awareness of cerebrospinal fluid (CSF) leaks.