I want to hear from others who understand

Read about other people’s experiences of living with a meningioma

When you are diagnosed with a meningioma, you may find yourself feeling alone, isolated and lost. This is something that many people feel, regardless of what stage of the pathway they are on.

There is real value in being able to speak to others who understand and can relate to what you are experiencing. In this section, we share meningioma patient stories and more information on how you can connect with other people with a meningioma diagnosis and go from feeling isolated to included and part of a community.

We have a welcoming and supportive online community in our closed and carefully moderated Facebook group. With over 2,500 members, it is a safe space for you to share experiences and support others.

Hear from our community

You aren’t going through this alone. Read real stories from real people on their journey with brain tumours.

Katie Barker’s story

Naomi and Madi – from isolation and fear to friendship

Rachel’s Story

Nikki’s story

Thomas (and Erica’s) story

Trish’s story

Julie’s story

Meet others who understand.

As well as reading meningioma patient stories, connecting and talking with other people who are also living with a meningioma diagnosis is so important. It can help you feel less alone, and part of a support community. There’s a few different ways you can get involved whether it’s on our Facebook group, at our monthly virtual meeting, or through peer support. Click the link below to find out more about how you can connect with others in the meningioma community.

Meningioma Meetup Community

Join our monthly meningioma support group, a virtual Meetup we call ‘Meningiomas Matter’. Chat with other people living with a meningioma diagnosis. There is no agenda – it is just an opportunity to get together with other people who understand.

Braintumour Hub

Created for brain tumour patients and caregivers, the brain tumour hub is an easy to navigate database of verified brain tumour support resources that have proven valuable to others.

Find support and resources from across the UK

Braintumourhub Graphic

Peer support

As well as our meningioma support group ‘Meningiomas Matter’ we also facilitate peer support amongst our community. The aim of our peer support service is to directly connect you on a one-to-one basis with people who have a shared or similar experience, in order to help you feel better connected and supported.

You may have a specific question about life with a brain tumour, or you may just want to speak to someone who understands. How often and how you communicate is up to you, but a support specialist will oversee the relationship and keep in touch to make sure it is working for both of you.

Did this information make you feel more resourced, more confident or more in control?

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