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0330 122 4470

All you need to know about cavernoma, so you never have to feel alone!

UK charity supporting those affected by cavernoma

UK charity supporting those affected by cavernomaUK charity supporting those affected by cavernomaUK charity supporting those affected by cavernoma
Join us!

All you need to know about cavernoma, so you never have to feel alone!

UK charity supporting those affected by cavernoma

UK charity supporting those affected by cavernomaUK charity supporting those affected by cavernomaUK charity supporting those affected by cavernoma
Join us!

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filler@godaddy.com

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Welcome

The Cavernoma Society was created by those affected by cavernoma, for those affected by cavernoma. Our mission is to help and support members through their cavernoma journey so that they never have to feel alone. Whether you're a patient, family member, or carer, we provide counselling, therapeutic retreats, support groups, yoga, pilates, and meditation classes, information, and support with benefits. Take a look at our website and get in touch - we'd love to hear from you!

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What is a cavernoma?

How will I know I have a cavernoma?

How will I know I have a cavernoma?

Cavernoma raspberries

A cavernoma is a lesion made up of a cluster of abnormal dilated blood vessels most commonly found in the brain or spine.  A typical cavernoma looks like a raspberry. It's filled with blood that flows slowly through vessels that look like 'caverns'. It is usually less than 3 centimetres in size. It can be genetic or incidental.

How will I know I have a cavernoma?

How will I know I have a cavernoma?

How will I know I have a cavernoma?

Facts about cavernoma

Approximately 1 in 600 people have a cavernoma. Cavernomas are usually not detected until they become symptomatic /bleed. Those that aren't symptomatic are usually detected after the patient has a routine MRI scan for another condition.

How are cavernomas detected?

How will I know I have a cavernoma?

How are cavernomas detected?

Cavernoma brain scans

A Cavernoma can be detected by CT or MRI scan. Those with symptomatic Cavernoma are usually diagnosed after a bleed.

What symptoms could I have?

What is the treatment for cavernoma?

How are cavernomas detected?

Genetic cavernoma

Patients with Cavernoma often report symptoms such as; stroke, epilepsy, migraines, nerve pain, problems with vision and speech, problems with balance, problems with coordination, and sometimes, issues with mobility. 

Is cavernoma cancerous?

What is the treatment for cavernoma?

What is the treatment for cavernoma?

Cavernoma and cancer

It is uncommon for a Cavernoma to be cancerous. Cavernomas are usually benign.

What is the treatment for cavernoma?

What is the treatment for cavernoma?

What is the treatment for cavernoma?

Cavernoma brain and spine surgery

Most neurosurgeons will take a 'watch and wait' approach with Cavernoma patients, unless there's a real need for surgery. Craniotomy is the main treatment for Cavernoma, however, Gamma Knife Radiotherapy is becoming more and more popular. 

About Us

Cavernoma support groups

Our Team

Our History

Our History

The Cavernoma Society was founded by a team who are passionate about making a difference to the cavernoma community. 

Our founding team of trustees have either had a cavernoma or know someone who has had one, so we all have first-hand experience of the condition and what it entails. 

Cavernoma questions answered

Our History

Our History

Our History

Seeing a need for emotional support and research in this area, we formed the Cavernoma Society to provide practical solutions. We are at the beginning of our journey*, but we're already looking at how we can make a difference to you! 

Cavernoma cognitive issues

Our Mission

Our History

Our Mission

We will focus on making the maximum positive effort for our community. Our members and volunteers provide the momentum that helps us affect change. Our aim is to provide solutions that make a long-lasting difference.

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Supported by

Registered with the Fundraising regulator
The People's Postcode Lottery
The National Lottery Community fund

Copyright © 2018 Cavernoma Society - All Rights Reserved. 

Registered Charity number: 1184406

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