Young mother is a 'ticking timebomb' due to EIGHT tumours that cause hearing loss and balance problems - and

there's a 50% chance her son could inherit the condition

Derrie Tustin has neurofibromatosis, which causes nervous system tumours Has five brain tumours and three on her spine - more could grow at any time Condition affects 1 in 35,000 and causes hearing loss and balance problems Has to wait until her son Kai, 4, is 18 to learn if he's inherited the condition Says she cannot face having any more children in case she passes it on
By Emma Innes PUBLISHED: 11:05 GMT, 21 May 2013 | UPDATED: 11:10 GMT, 21 May 2013

A mother says she is a 'ticking time bomb' after being diagnosed with a rare condition that condemns her to living with eight tumours. Derrie Tustin, 25, has five non-cancerous tumours in her brain and three on her spine - and doctors have warned her that more could develop at any time. Ms Tustin, from Worcester, was diagnosed with life-threatening condition neurofibromatosis type two (NF2), which causes nervous system tumours.

Derrie Tustin (pictured with son Kai, 4) has neurofibromatosis type two which causes tumours to develop in the nervous system

NF2 causes tumours that grow on the nerves responsible for hearing and balance - causing symptoms including hearing loss, tinnitus and balance problems. Tumours can also develop inside the brain or spinal cord and in the nerves to the arms and legs. These can cause symptoms such as weakness in the arms and legs and persistent headaches. Ms Tustin said: The condition makes me a ticking timebomb, really. The tumours can flare up any time, any day, for the rest of my life - that's something I can never escape from. Doctors keep an eye on the tumours but it's just like playing Russian roulette - you just don't know what will happen next. It's made me a lot a stronger but each appointment is nerve-racking to say the least. I never know if I'm going to come out being diagnosed with potentially fatal cancer.

Ms Tustin (pictured with her mother, Jennie) currently has five tumours in her brain and three in her spine but doctors have warned her that more could develop at any time

Ms Tustin has been told that there is a 50 per cent chance that her son Kai will have inherited the genetic mutation that causes the tumours to develop

NF2 is caused by a genetic mutation and in half of cases the mutation is passed from parent to child. On other occasions, such as in Ms Tustin's case, the mutation develops on its own in a child with no family

history of the condition. There is no cure for NF2 so treatment involves managing the symptoms as they occur - for example, surgery can be used to remove tumours but it can cause deafness or facial weakness.

She has had surgery to remove a lump from her ear but she now has to decide whether to have one of her brain tumours removed and risk deafness

Prognosis for NF2 patients varies significantly as some people's symptoms get worse rapidly while in others the condition progresses slowly. The average life expectancy for someone with the condition is 65. Ms Tustin was devastated to learn that she might have passed the condition onto her four-year-old son Kai, but she will have to wait until he is 18 before doctors know if he has inherited it. She said: It's a condition that affects one in 35,000 people - now I know what I'm facing and I hope to raise awareness about it. My son has a 50 per cent chance of inheriting it. I have to wait 15 years until I know if I've given to my son that's something no parent should face. I won't be having any more children unfortunately, I can't face passing it on. Ms Tustin now faces the difficult decision of whether or not to have a fast-growing tumour removed from her brain. The surgery would leave her deaf in her left ear but without it she will require monthly treatment. She has already had a lump removed from behind her ear. She said: At the moment I'm swaying more to towards the treatment as it's such a drastic change to lose my hearing.

The medical staff will keep tabs on the growth rate of the tumour. It's something I'm going to have with me for the rest of my life. Time is of the essence so I will be making the decision as soon as I can really. When I first heard about it I had no idea what it was but I've had so many people wish me well - I just want to help raise awareness for it and encourage others to have the tests. Ms Tustin's fianc, Mike, and her mother, Jennie, have supported her throughout the ordeal - going to every scan, medical appointment and treatment session. Ms Tustin said: I only found the tumour after I felt a lump behind my ear. It was terrifying; the thought of having cancer it just hits you. My family have been there for me at every waking moment. People know I'm strong and determined and just deal with it.

WHAT IS NEUROFIBROMATOSIS TYPE TWO?

NF2 is a gene mutation that causes tumours to grow on the nerves responsible for hearing and balance. These cause symptoms including hearing loss, tinnitus and balance problems. Tumours can also develop inside the brain or spinal cord and in the nerves to the arms and legs. These can cause symptoms such as weakness in the arms and legs and persistent headaches. The tumours are normally non-cancerous. NF2 is caused by a genetic mutation and in half of cases the mutation is passed from parent to child. On other occasions the mutation develops on its own in a child with no family history of the condition. There is no cure for NF2 so treatment involves managing the symptoms as they occur - for example, surgery can be used to remove tumours but it can cause deafness or facial weakness. Prognosis for NF2 patients varies significantly as some people's symptoms get worse rapidly while in others the condition progresses slowly. The average life expectancy for someone with the condition is 65. NF2 affects about one in every 35,000 people. Source: NHS Choices

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Comments (17)
Newest Oldest Best rated Worst rated View all Very brave lady, hopefully they'll find a cure in the years to come. Medical science is getting better all the time, so there's still hope that she could be cured or the tumours could be stopped from growing. - Debbee , Newcastle, United Kingdom, 21/5/2013 17:04 Click to rate Report abuse or 50% chance the lad will not get it, be possitive ....please for his sake - Daz Hales , Koblenz, 21/5/2013 16:57 Click to rate Report abuse Surely if they know it's a genetic mutation then they can test her kid now and spare her the wait - Serfer Dude , Chavtown The condition has variable penetrance - if hes tested positive then theres still a chance it will never affect him. - Harry , Bedford, 21/5/2013 16:05 Click to rate Report abuse Neurofibromatosis tends to skip a generation, so her son should be ok. However it could well be passed on to her sons children. The tumours themselves are harmless, its only the position of where they occur that can cause serious problems. - Northern Star , Lancs UK, 21/5/2013 15:03 Rating 6 Rating 9 Rating 8

Click to rate Report abuse

Rating 3

Good luck to them. - Kirsty , Scotland, United Kingdom, 21/5/2013 14:40 Click to rate Report abuse My Son has a rare genetic condition and we were offered the chance to test (if we wanted to have another baby) to see if it was a boy or girl (as his condition only affects boys) and they would be also be able to tell if the baby had the same condition so that we could all be prepared when he was born. I wonder why they can't offer the same? - Littlemissnikig , South, 21/5/2013 14:35 Click to rate Report abuse My mother in law has recently found out she has this condition. My 3 year old daughter is currently awaiting tests to see if she has inherited it too. Surely her son doesn't have to wait til he's an adult. Thoughts are with their family - Bells , Middlesex, United Kingdom, 21/5/2013 14:31 Click to rate Report abuse Such a beautiful lady! I wish her all the best and hope Kai doesn't have the condition. After all there is 50% chance that he won't have it! - Justyna85 , Warrington, UK, 21/5/2013 13:46 Click to rate Report abuse I nearly cried while reading this, only because I am so happy humbled and grateful to have no such worries in my life. These people and the families are extraordinary. Thank You for sharing your story xx - Chella-westmids , west mids, United Kingdom, 21/5/2013 13:37 Click to rate Report abuse Surely if they know it's a genetic mutation then they can test her kid now and spare her the wait - Serfer Dude , Chavtown EUSSR, United Kingdom, 21/5/2013 13:33 Click to rate Report abuse The views expressed in the contents above are those of our users and do not necessarily reflect the views of MailOnline. Today's headlines Most Read 'If my son was a dog, I'd have him put down': Mother whose son suffers from ADHD says she is fed up of her daily, violent battles with him Rating 56 Rating (0) Rating 2 Rating 11 Rating 1 Rating 9

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