Understanding the symptoms of Cavernoma and find the support
15/08/2023
Cavernoma is a cluster of abnormal blood vessels, typically found in the brain and spinal cord. Walls of these blood vessels are abnormally leaky, making them vulnerable to bleeding. They are sometimes known as cavernous angiomas, cavernous haemangiomas, or cerebral cavernous malformation (CCM). [1]
Research suggested that one person in 625, in the UK, has a brain Cavernoma without symptoms (asymptomatic). This is equivalent to around 108,000 people which is enough to fill the Wembley Stadium.[2]
Less than half of children can inherit this disease from the parents if both of his/her parents have this disease, but it is usually random and can also be caused by radiation exposure such as previously having radiotherapy to the brain.
Although cavernoma does not typically generate symptoms, when they do, they may include:
- bleeding (haemorrhage)
- fits (seizures)
- headaches
- neurological problems, such as dizziness, slurred speech (dysarthria), double vision, balance problems and tremor
- weakness, numbness, tiredness, memory problems and difficulty concentrating
- a type of stroke called a haemorrhagic stroke[3]
Most of the time, cavernoma cause no problems and many people never know they have one. However, this could be serious as there could be bleeding into the brain, causing neurologic problems and seldomly death.
It is important to seek medical support if you are experiencing any of these symptoms, even in their slightest as it may be serious than you perceive it to be.
You should know that with right support and care it is possible to manage its symptoms and even eradicate them, helping you to maintain a decent quality of life. Do not overthink it as your mental health is equally important.
Symptoms management could include:
- Medications
- Support groups
- Surgery
- Stress reduction techniques (e.g. Meditation)
- Lifestyle modification
- Follow up cares
- Therapies [4]
Living with a cavernoma can be daunting but it is possible to find ways to manage the symptoms and maintain a good quality of life. Despite the difficulties presented by the disease, it is possible to continue following your objectives and dreams and have a happy life with the right support and management. It is important to remember that each person's experience with a cavernoma is unique, and that getting the right help and support is critical for successfully managing the disease and keeping a positive outlook.
We have highlighted some groups that provide support and information for those who are affected by cavernoma, including friends and family. For more information, please visit their website.
- Cavernoma Alliance UK
Website: https://cavernoma.org.uk/
Email: helpline@cavernoma.org.uk
- Cavernoma Society
Website: https://cavernomasociety.org.uk/
Helpline: 03301224470
Healthwatch Barking and Dagenham encourage people who have this condition to share their experience of using health and care services within the borough. We always welcome feedback about the local health and care services you have accessed. Call us on 0800 298 5331 or email us at info@healthwatchbarkinganddagenham.co.uk
***This blog was written by a work experience student and edited by the Healthwatch team***
[1] https://www.nhs.uk/conditions/cavernoma/
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