CSF Leak Association

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Charity details

Registered address
PO Box 5761,
Strathpeffer,Highland
IV15 0AQ

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Charity number
SC046319

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We are a UK-based Scottish Charitable Incorporated Organisation and registered charity working to raise the profile and support understanding of cerebrospinal fluid (CSF) leaks. We also aim to provide support and advice for sufferers for fellow sufferers, their families and supporters, and a resource for the medical profession.

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

When fluid leaks out, cranial pressure and volume can reduce, which then allows the brain to sag within the skull (often known as intracranial hypotension). As a result of this ‘brain sag’, sufferers often experience severe and unrelenting head pain, pressure, visual disturbances, hearing impairment, tinnitus, spasms, seizures and a wide range of other symptoms.

Research shows that at least 5 in 100,000 people each year are affected by spontaneous spinal CSF leaks alone, with many more suffering from cranial and iatrogenic CSF leaks. Leaks are not rare, yet are generally underdiagnosed; misdiagnosis of migraine, sinusitis and other headache disorders is common place, and on average correct diagnosis takes 13 months from onset.

Whatever the circumstances and severity of the symptoms, a CSF Leak is often painful, debilitating and life-changing. There is very little awareness amongst the general public and very little support for those in need. Many suffers fail to get correct diagnosis, let alone the care and treatment they need in order to reclaim their lives.

Our mission is to help to raise the profile and promote awareness of CSF Leaks and Spontaneous Intracranial Hypotension, and facilitate and support improved access to much needed help, support, information and, perhaps most importantly, treatment and care.

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