Help and Support

The CSF Leak Association is run by CSF leak sufferers and their supporters for CSF leak sufferers. We know first-hand how debilitating and isolating having a CSF leak can be. With this in mind, we co-manage an online CSF Leak community to enable you to make contact with other ‘leakers’ and those with an interest in the condition. Sharing your story with other sufferers can help to reduce isolation and to learn about others’ experiences of the condition. In addition, there are also a number of informal CSF leak Facebook groups.

As a charity, we have chosen to focus our efforts on raising awareness of CSF leaks, increasing the availability of information and wirking with doctors to secure clear and consistent treatment pathways, and are in the process of setting up a Medical Advisory committee . We hope that this work will lead to improved diagnosis and treatment options for CSF leak sufferers in the long term. We hope that by directing our limited resources towards long term solutions, this will give sufferers much needed hope.

Due to our limited resources and the fact we are not doctors or trained counsellors, we are unable to offer bespoke one-to-one advice, nor a condition-specific counselling service. If you wish to discuss or explore your health problems, or those of friends and family, we would always suggest that you make contact with your GP or other healthcare professional.

Talking with someone independent of a situation can also play an important role in making matters easier to cope with, both for CSF leak sufferers themselves and their families. Counselling allows you to talk with someone who is trained to listen attentively and to help you deal with things, and has been of great benefit to many CSF leak sufferers.

While we are unable to recommend any specific counsellor or psychotherapist, we have provided the following links in order to help you find someone with experience and qualifications: