There are a variety of forums and groups on the internet whose purpose is to facilitate discussion of CSF leaks and provide peer support for leakers and their families. There are some fantastic, compassionate people active in these groups with plenty of experience of living with a CSF leak and/or supporting sufferers.
Many of the people in these communities are willing to spend considerable time sharing experiences and giving advice, and we have found them all to be very welcoming to new members.
Spinal CSF Leak Community
We have partnered with the Spinal CSF Leak Foundation and Inspire to provide the Inspire Spinal CSF Leak community. The community offers a high degree of privacy, which is important to many members, particularly those that wish to protect their information and keep things private. Unlike Facebook, absolute anonymity is also an option. Email notifications can be customised and provide quick-links to recent discussions.
You can join the Inspire community here: www.spinalcsfleak.inspire.com
Communities for other types of CSF Leak
- CSF Leak & Intracranial Hypotension) Facebook Group (FB)
- CSF LEAKS (UK & OTHERS) Facebook Group (FB)
- Canadian Support Group (FB)
Defunct CSF Leak Groups
In the past, the Braintalk Communities forum used to be very active on the topic of CSF leaks, however it is relatively quite these days. We have included links to their old forum as it contains a wealth of historic information.
- Braintalk Communities CSF Leak (archived forum)
Disclaimer: The CSF Leak Association is not responsible for the content of any community website, group or forum linked to from this website. It is possible that some of the information distributed by, or expressed within, any community website, group or forum may be contradictory to the advice on this site, at odds with medical opinion, misleading or even harmful to you. Where there is any doubt, you must always seek professional healthcare advice.