Ian Collins is Leading Britain's Conversation.
6 October 2017, 17:25
At just 27 Simona suffered a bleed on her brain while driving. She was subsequently diagnosed with cavernomas, now she’s volunteering for a charity supported by Global’s Make Some Noise to help others living with the rare condition.
A cavernoma is an abnormal growth in the brain or spine. These growths are made up of clusters of blood that bleed, causing cebebral haemorrhage.
In Simona’s case it led to a stroke, but in other cases it can lead to paralysis or even death.
She’s now volunteering for Caneroma Alliance UK, a charity which supports people of all ages who have been affected by the condition.
Zane is just eight-years old and also has the condition, his description to Iain Dale about living with caneromas is incredibly powerful.
He was only 7-months old when he started to become poorly. His condition was misdiagnosed several times, until he eventually had an MRI scan in December 2010 which revealed 15 cavernomas in his brain.
Tests showed that he has a rare genetic form of the condition, which only 100 people in the world have.
His condition is currently stable for the first time in his life. However, the number of cavernomas in his brain has grown to 43, meaning he lives with a high risk of having a brain haemorrhage at any time.
This means he has to have regular checks ups and scan, often visiting specialist doctors at the Cavernoma clinic in Chicago.
Speaking about his condition during an emotional interview, Zane said: "When I go to the hospital in Chicago it really, really hurts me when I have needles.
"I don't like it but that's what I'm going to have to go through and I would really like it if they could take my cavernoma but that might not happen."