A MOTHER who has a rare condition that causes brain tumours has spoken out to raise awareness – and told of the life-changing choice she faces.

Derrie Tustin, of Warndon, Worcester, has the rare life-changing condition neurofibromatosis type two (NF2), which causes nervous system tumours (lumps) in the brain and spine.

These tumours are mainly benign but can cause hearing loss, deafness, and mobility problems because of pressure on key nerves.

Mother-of-one Miss Tustin, aged 25, says few people understand the disorder and she is determined to raise awareness today – World Neurofibromatosis Day.

Miss Tustin, a customer care co-ordinator at your Worcester News, had an operation to remove a lump behind her ear at Worcestershire Royal Hospital in Worcester in April 2011 but further investigations, including an MRI scan at the Queen Elizabeth Hospital in Birmingham, revealed she had NF2.

Miss Tustin now faces a difficult decision – to have a fast-growing tumour (acoustic neuroma) removed from her brain, which would leave her deaf in her left ear or have injections every month for the rest of her life to stop her hearing deteriorating further.

She has been told potential side effects of the drug Avastin include damage to the kidneys and high blood pressure. She has also taken the decision not to have any more children, despite wanting more, because of the risks of passing on the disorder.

On diagnosis her first reaction was relief because she knew the tumours were life-changing rather than life-threatening. She said: “No one knows about it – no one has a clue what it is. When it came out I had tumours I had so many well-wishers. I had to say ‘it’s bad but it’s not that bad’.

“I hadn’t heard of it either. When I was told I had NF2 my reaction was ‘what the hell is that?’ It’s something people can’t tell you have by looking at you. There’s a 50 per cent chance I could have passed this on to my son. I have made the decision not to have any more children because I can’t face passing it on.”

Miss Tustin has received specialist care at Addenbrooke’s Hospital in Cambridge and is still making up her mind but knows that time is of the essence as the tumour continues to grow and affects her hearing. She is ‘99 per cent’ sure she wants the monthly injections of the drug to bring the tumour under control rather than surgery. She has had strong support from her partner, 26-year-old Mike Collins, and her mum, Jennie Gunnell, who has been with her to every appointment, treatment and scan.

She said the scariest thing about NF2 was the prospect of losing her hearing in both ears although a tumour affecting her right acoustic nerve is more stable.

She also said she had yet to meet anyone with the same condition which would help her make a more informed decision.

Miss Tustin said: “Everyone says how strong I am. I don’t think I am but I must be because no one even knows there’s anything wrong. I just deal with it.”

She said it made her appreciate her son Kai, aged four, more because if she had known she had NF2 she would probably not have had children.