A DORCHESTER based charity is transforming the lives of people with a little known brain condition.
County town resident Dr Ian Stuart set up the Cavernoma Alliance UK back in 2005 to help support people suffering from the condition.
His tireless work since has seen hundreds of members join the charity and one Dorset couple have been among those to benefit.
Georgina Legg, 33, who lives in Sturminster Marshall with her husband Scott, is full of praise for the support Dr Stuart’s charity has offered her and her family.
She said: “To be honest until we found the charity we didn’t really have any information at all on cavernomas. I thought I was the only person in the country that had it.
“To be able to talk to other people with the same condition is very reassuring.
“It’s fantastic, it did change my life completely when I found it.”
Georgina was diagnosed in 2004 after several weeks of uncertainty.
She said: “When I was diagnosed with a cavernoma they literally said you have a living time bomb in your head.”
The condition caused her problems with her balance and resulted in blackouts and dizzy spells but Georgina said she still didn’t really understand her condition.
She said: “It went on like that for about four years until I found Cavernoma Alliance and that was when it all started to come together.”
Georgina said through the charity she has been put in touch with a neurosurgeon in London and been able to attend physiotherapy appointments, which proved a success.
• On Saturday, June 4 Cavernoma Alliance UK will be holding its fifth annual forum at the Grange Holborn Hotel in London.
What is a cavernoma?
A cavernoma is made up of abnormal blood vessels and can measure from a few millimetres to several centimetres.
A cavernoma can get bigger but the growth is not cancerous and it does not spread to other parts of the body. Sometimes the cells lining the blood vessels bleed inwardly or outwardly into the surrounding tissue.
The risk of re-bleeding varies widely and can be difficult to predict.
Symptoms can vary widely depending on the location of the cavernoma.
They can include epileptic seizures, headaches, dizziness, weakness, tiredness, numbness, memory and concentration difficulties.
1 in 600 people in the UK has a brain cavernoma without symptoms – roughly 90,000 people.
People who experience symptoms are much rarer, at around 1 in 400,000.
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