Join the #RaspberrySquad and help us raise awareness of cavernoma
UK charity providing support to those affected by cavernoma
Join the #RaspberrySquad and help us raise awareness of cavernoma
What is a cavernoma?
How will I know I have a cavernoma?
How will I know I have a cavernoma?
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?
It's estimated that approximately 1 in 600 people in the UK have a cavernoma, however, it's considered a rare condition as around 1 in 400,000 will experience a bleed, meaning that their cavenroma is symptomatic. Therefore, 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?
A Cavernoma can be detected by CT or MRI scan. Those with symptomatic Cavernoma are usually diagnosed after a bleed, however, some will be a coincidental finding when a patient is being scanned for another reason.
What symptoms could I have?
What is the treatment for cavernoma?
How are cavernomas detected?
Patients with Cavernoma often report symptoms such as; stroke, epilepsy, migraines, nerve pain, problems with vision and speech, issues with balance, lack of coordination, and sometimes their mobility will be affected.
Is cavernoma cancerous?
What is the treatment for cavernoma?
What is the treatment for cavernoma?
It is uncommon for a Cavernoma to be cancerous, they are usually benign. However, they can expand in size due to increased blood flow, but they can also shrink.
What is the treatment for cavernoma?
What is the treatment for cavernoma?
What is the treatment for cavernoma?
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. This does not remove the cavernoma, but is aimed to help strengthen the blood vessels and therefore reduce the likelihood of a bleed.
About Us
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. The charity is run completely by volunteers, so all of the funds raised are used to provide services to those affected by cavernoma.
Our founding team of trustees have either had a cavernoma or know someone who has had one,
The Cavernoma Society was founded by a team who are passionate about making a difference to the cavernoma community. The charity is run completely by volunteers, so all of the funds raised are used to provide services to those affected by cavernoma.
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.
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 a small charity with a BIG heart and want to provide practical and emotional support at a time when you need it. We know that the journey can be frightening, lonely, and often frustrating, so we're here to
Seeing a need for emotional support and research in this area, we formed the Cavernoma Society to provide practical solutions. We are a small charity with a BIG heart and want to provide practical and emotional support at a time when you need it. We know that the journey can be frightening, lonely, and often frustrating, so we're here to be your shoulder to cry on and your advocate when it comes to getting the support you need.
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. Our 'Heal Your Brain' fully-funded Retreats, to our benefits support service, our world-class counselling, and our Raspberr
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. Our 'Heal Your Brain' fully-funded Retreats, to our benefits support service, our world-class counselling, and our Raspberry Day Awareness day, we aim to raise awareness of this condition and support you so that you feel seen, heard, and less alone.
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