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Emily, 16, hopes new drugs will make a difference

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THE lives of several islanders are about to be transformed thanks to two drugs being made available locally to treat cystic fibrosis.

Emily Bray 16, lives with cystic fibrosis but she hopes she will benefit from the availability of the drug Orkambi in Guernsey, which will reduce the number of tablets she has to take and probably mean fewer hospital visits. (Picture by Adrian Miller, 26392815)

Among them is 16-year-old Emily Bray, who currently has to take about 40 tablets a day to help treat the condition.

She said that cutting these down is one of her main hopes when the drugs Orkambi and Symkevi become available.

Health & Social Care has announced that after talks with the manufacturer, the two drugs will be offered locally.

Emily said that not having to take so many drugs every day was one thing she was looking forward to: ‘And I hope I won’t have to have as many hospital visits,’ she added.

The pills she takes at present include medication to help her digestive system as well as vitamins and antibiotics for an on-going lung infection.

She also has to take treatment for CF-related diabetes.

‘From what my dad says, I am a candidate for Orkambi,’ she said, and in the next few weeks she will be finding out more about how the treatment will work and when she will start receiving it.

Among the condition’s effects on her daily life are regular coughing fits which she has to endure, and which she said she feels bad about since it could disrupt her Blanchelande College classmates’ lessons.

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She said she has asked to be able to sit her GCSEs in a separate room next year, to avoid distracting them if she has a bout during an exam.

She is hoping that Orkambi might mean a significant reduction in this problem, and is also keeping her fingers crossed that it will avoid her having to visit the CF clinic in Southampton more often as she gets older.

‘I go there every three months now for routine check-ups,’ she said. ‘Unfortunately when I get to adult care it will all be in Southampton, so I could be going back and forth constantly. I hope the new drug means I won’t have to go over as much.’

Emily has not let her condition stop her doing things she enjoys, and as well as trampolining she also plays golf occasionally: ‘But I cough constantly, which is a pain, but the drug will hopefully help with that,’ she said.

Mark Ogier

By Mark Ogier
News reporter

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