Should I f ind out if I’ll get genetic brain disease...?
A TEENAGER faces an agonising decision over whether to find out if he will develop a devastating genetic condition.
Cameron Newport, 17, has watched his mother’s health deteriorate from Huntington’s Disease, which causes progressive brain damage.
His grandfather died of the disorder when Cameron was about ten and his mother Wendy now needs round-the-clock care.
As he approaches his 18th birthday Cameron, from Rosyth, Fife, has the option of investigating whether he, too, has inherited the disease.
It runs in families and there is a 50:50 chance he has inherited it from his mother.
But deciding whether to get tested is one of the hardest decisions teenagers from affected families face.
If he is negative then Cameron – who hopes to study politics or history at university – can lead a normal life.
But if he is positive, then he will know with certainty that he will develop the disease – and could pass on the faulty gene if he has children. Early symptoms include mild tremors and clumsiness, but as the disorder progresses, it causes severe personality changes, depression, difficulty eating, speaking and walking as well as involuntary limb movements.
There is no cure and treatment is only to ease symptoms.
Around 12 people per 100,000 are affected by Huntington’s Disease in the UK.
The most common age range to show symptoms is between 30 and 50.
Testing is not available until reaching the age of 18 after counselling so Cameron – whose 18th birthday will be in April 2018 – is weighing up his options. His mother, 43, a former care assistant, was diagnosed with Huntington’s Disease seven years ago.
Cameron said: ‘I always knew mum was ill. She’s been ill so long, it’s all I can remember.
‘She would fall over a lot. She was very forgetful, she’d forget to cook dinner, forget to clean the house and she couldn’t look after us.
‘The symptoms got a lot worse and now she is going downhill.’
He lives with his father Alex Newport, a former chef, 46, and siblings Declan 13, and Tiffany, 12. Both his younger brother and sister will also face having to make the decision over being tested when they get older.
At the moment Cameron is undecided. ‘If I knew I had it, how would I deal with that? I’ve seen my mum get worse,’ he said.
‘To know that I had it too, it would be devastating.
‘It is a lot of pressure as a young adult. You want to know and you feel the weight on your shoulders, but if the test is positive it’s always going to be at the back of your mind that you will become ill. It can either go really well or really badly.’
Cameron receives support from the Scottish Huntington’s Association, which will this year receive a £5,000 grant from Genetic Disorders UK on the UK charity’s annual Jeans for Genes Day. The money will go towards a summer camp for children with Huntington’s Disease in their family.
This year’s Jeans for Genes Day – when participants wear jeans to work or school in return for a donation – is on September 22. To order a fundraising pack visit www.jeansforgenesday.org.