User:Ianstu/sandbox/Cavernoma Alliance UK

New article name goes here new article content ... Cavernoma Alliance UK (CAUK) is a charity founded in 2005 by Ian Stuart in Dorchester, Dorset, for those affected by cavernoma – otherwise known as cerebral cavernous malformation (CCM); cavernous haemangioma; or cavernous angioma. Its mission is to improve the quality of life for all those affected by and create greater awareness of the condition. Stuart had a bleed from a brainstem cavernoma twenty years earlier and became increasingly frustrated by the lack of knowledge amongst the medical community of the condition as well as how little support and information was available.

A cavernoma is made up of abnormal blood vessels and can be found in the brain and/or spinal cord and looks like a mulberry. They can measure from a few millimetres to several centimetres. A cavernoma can get bigger, but this engorgement is not cancerous and does not spread to other parts of the body.

Sometimes the cells lining the blood vessels ooze small amounts of blood (inwards) within the cavernoma, or (outwards) into the surrounding tissue. The risk of re-bleeding varies widely and is difficult to predict accurately.

Cavernoma also occurs in other areas of the body.

1 person in 600, in the UK, has a brain cavernoma without symptoms (asymptomatic). This equates to roughly 120,000 people A spinal cavernoma is rarer than a brain cavernoma.

People who experience symptoms are considered to have a rare condition. An ongoing study based on the entire population of Scotland found that each year, 1 person out of 400,000 is diagnosed with a symptomatic brain cavernoma.

A minority of cavernoma (less than 50%) are thought to be a genetic form and genetic testing can be used to determine whether the cavernoma has a genetic cause or is likely to be random.

Cavernoma is often diagnosed after a person has experienced symptoms which can include:-

haemorrhages seizures headaches neurological deficits such as dizziness, slurred speech, double vision and tremors weakness, numbness, tiredness, memory and concentration difficulties.

The type, severity, combination and duration of symptoms vary, depending on the location of the cavernoma. Single or multiple cavernomas near the surface of the ‘hemispheres’ or ‘lobes’ in the brain can cause epileptic seizures. Symptoms may occur after a ‘bleed’ but this is not true in every case. MRI scans are the most reliable diagnostic tool available to determine the presence of cavernoma. It is important, however, that specific scan sequences are used: “T2-weighted” and “gradient echo” (also known as T2-star).

Other diagnostic tools include CT scans and angiography but often these scans cannot be relied upon to show a cavernoma.

Some cavernomas are diagnosed after an investigation into other symptoms not definitively linked to cavernoma. These are known as ‘incidental’ cavernoma.

While people with cavernoma have things in common, each person remains unique. This should be taken into account for each individual who may require both lifelong support and medical attention. Because cavernoma symptoms can vary widely from person to person, depending on location, number/ size, effective treatment options can vary also. Specific medical advice can only be given by a neurologist or a neurosurgeon.

Certain medications can be prescribed to help control symptoms such as epilepsy and pain. In some case, neurosurgeons might recommend surgery to remove the cavernoma. Some locations and positioning of cavernomas might make removal unfeasible however. Treatment options also include ‘stereotactic radiosurgery’ which is a single concentrated dose of radiation therapy. Gamma Knife and CyberKnife are a non-invasive type of stereotactic radiosurgery. It is unknown how well either single or multiple cavernomas respond to this form of treatment. A ‘wait-and-watch’ approach may be recommended and this can include periodic MRI scans to monitor the cavernoma(s). Genetic counselling may be available for some individuals and their families to determine if there is a genetic cause.

There is no standardised treatment protocol for cavernoma as historically relatively little has been known about the condition. CAUK administered a Priority Settings Partnership (PSP) project in collaboration with the James Lind Alliance. This research project consulted medical professionals and people affected by cavernoma in order to establish the treatment uncertainties. The information gathered will help inform future research into the treatment and management of cavernoma.

In 2019 CAUK supported a £1 million bid to the National Institute of Clinical Research to investigate the top uncertainty uncovered by its members through the PSP viz: does treatment (with neurosurgery or stereotactic radiosurgery) or no treatment improve the outcome for people diagnosed with brain or spine cavernoma?

Also, the summer of 2019 CAUK achieved over 2500 members in the UK and worldwide. The charity provides free support and information for those affected by cavernoma including friends, family and carers. CAUK also aims to raise awareness of this relatively unknown condition through the general public in addition to the medical community. CAUK does this by organising various events such as our Annual International Forum, running social media support groups, signposting people for information and publishing a newsletter. CAUK depends on funding from grants, foundations and the fundraising efforts of its members and supporters.

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