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Experiences with
Arteriovenous malformation (AVM)
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Communities
2 public communities
Cavernoma Alliance UK
438 members
We are a community that supports those affected by cavernoma, otherwise known as cerebral cavernous malformations or cavernous angioma. What is a cavernoma? A cavernoma looks like a raspberry and are also known as cavernous angioma, cavernous haemangioma or cerebral cavernous malformation (CCM). A cavernoma is made up of abnormal blood vessels and can be found in the brain and/or spinal cord. Cavernomas can measure from a few millimetres to several centimetres. A cavernoma can get bigger, but this growth is not cancerous, and it does not spread to other parts of the body. Frequency 1 person in 600, in the UK, has a brain cavernoma without symptoms (asymptomatic). This equates to roughly 90,000 people – enough to fill Wembley Stadium. A spinal cavernoma is rarer than a brain cavernoma.
L-W-O Community
167 members
Welcome to the L-W-O Community. We are a non-profit group set up in September 2013 for anyone who lives with lymphoedema or a lymphatic malformation. L-W-O is based in the UK, but we do have a global following. There is thought to be over 400,000 people in the UK living with lymphoedema. We are an established Community who provide non-medical tips and advice for our members. Lymphoedema takes a while to come to terms with, as you do, the more positive you can be about your condition then the easier it becomes to live with. Please remember that lymphoedema is manageable with the right treatment. L-W-O’s aim is: A community that brings people together for a common cause and shared interest in lymphoedema Promote self-care and positivity To encourage you to become your own advocate Share stories about the lives of those living with lymphoedema Share new research, campaigns and debates from the lymphoedema community Voice loud and clear - Lymphoedema exists, we exist