Funds will support Target CSF Leaks in producing educational resources for patients and healthcare professionals, peer-support networks for people living with CSF leaks and their carers, advocacy work to improve diagnosis and treatment, and direct grants or support for individuals affected.

Hi, I’m Glynis, and I’m raising funds for the amazing Target CSF Leaks charity, who support people living with cerebrospinal fluid (CSF) leaks, a condition that’s often invisible, painful, and misunderstood.

Doctors believe I have a CSF leak following an epidural during the birth of my son, Sebby, in March 2022.

Since then, I’ve had two spinal procedures (epidural blood patches) that have only partially helped. I’m now waiting for further spinal imaging and investigations to hopefully locate the exact site of the leak and access a targeted repair procedure or surgery.

Living with a CSF leak has changed everything I’ve had to adapt my life around chronic pain, fatigue, and neurological symptoms, and it’s impacted my ability to parent, work, and take part in normal day-to-day life. There’s been guilt, grief, and adjustment but also growth, resilience, and purpose.

Ever day can be a struggle but I’ve learned that I can still give back by sharing my story, raising awareness, supporting others and a little fundraising.

The Target CSF Leaks charity has been a lifeline for me. In particular, Naomi, who has listened after stressful appointments, offered sturdy advice, and guided me towards the right treatment path when everything felt uncertain.

Why this matters:

CSF leaks are still under-recognised and often misdiagnosed. Many people spend years in pain without answers. This charity provides vital support, awareness, and advocacy that can change and even save lives.

Even by reading this, you’ve already helped by learning about a condition that you may one day recognise in someone else.

Thank you so much for your kindness, your time, and your support, it truly means the world.

What is a CSF Leak?

A CSF leak happens when the fluid protecting the brain and spine escapes through a tiny tear.

This can cause severe headaches when upright, neck/back pain, dizziness, nausea, fatigue, vision or hearing changes, and brain fog.

Causes include spinal procedures (like epidurals), injury or trauma, and connective tissue conditions such as Ehlers-Danlos Syndrome.

Some leaks occur spontaneously with no clear cause.

Often misdiagnosed or misunderstood, leading to years of pain and uncertainty.

More awareness and funding means better diagnosis, treatment, and support for those affected.