Cystic Fibrosis (CF) Awareness Week by Alice Peterson
This week, 19th-25th June, is the annual Cystic Fibrosis Awareness Week, a week of campaigning and spreading the word across the country about the impact of this disease. I was so pleased to see Alice Martineau, the singer who inspired my latest novel, A Song for Tomorrow, featured in the Telegraph on Monday, to mark the first day. And today, day five, is wear something yellow day and my Mr Darcy is only too happy to don a sunny yellow ribbon for this worthy cause.
Before I wrote A Song for Tomorrow I knew little about CF except that it was a lung condition that shortened lives. I had read a few articles about Alice Martineau only months before her death, when her debut album, Daydreams, was being promoted. She was a beautiful woman and so determinedly upbeat about her future that it was hard to imagine she was desperately ill. The reason I was drawn to writing about Alice years after her death was that she had left behind an astonishing legacy of courage, hope, talent and music. She never gave up, and her message was to dream big, that anything is possible, no matter what the circumstances.
I still feel that way about Alice, but while researching the book I have also discovered many other truths. When I first met Alice’s brother, Luke Martineau, to discuss how I would fictionalise Alice’s story, one of the first things he said to me was, ‘please don’t shy away from the brutal reality of this illness; don’t sugar coat it’. On paper the facts are this: CF is the most common genetically inherited disease in this country, affecting more than 10,800 people. Thick mucus builds up in the lungs, creating a breeding ground for infection, which leads to progressive damage. But it’s not only the lungs that are affected; mucus also clogs the pancreas, which then causes terrible gut and digestive problems.
But the brutal reality Luke was referring to, and I am sure he was speaking for thousands of others who live with CF or support those with the condition is this: Every morning and evening they have to do hours of physiotherapy to bring up the mucus that fills their lungs. They have to swallow breathtaking amounts of tablets and enzymes to help their digestion. They have to inhale antibiotics to manage the never-ending infection in their chest. They can cough up pints of blood. Their cough isn’t like our cough. It’s a haunting cough that is with them, day and night.
This is why awareness is so important. Behind closed doors it’s hard to fully understand how CF affects an individual, especially when everyone is different. But the one universal truth is it doesn’t just affect those 10,800 people. It affects a mother caring for her son or daughter. It affects a father who loses their child far too young, mourning a life stolen. It affects a brother watching his sister endure, day after day, a terrible feeling of time ticking away, with no cure.
Writing A Song for Tomorrow I greatly enjoyed working closely with Alice’s wonderful parents, Liz and David Martineau, Luke and his wife, Bella, and those who work for the charity, the CF Trust who also live with CF. I have witnessed nothing but fortitude, guts and humour. There was so much joy in Alice’s story; the support she received from friends, her family, her medical team and her boyfriend, and in return the love she gave them. Liz, David and Luke loved talking about her, telling me she had a wicked sense of humour. Liz told me she once designed a T-shirt for use at social occasions. On the front were all the words she hated, words like ‘brave’, ‘poor Alice’, ‘such a pity’, while on the back was her advice to those who talked about her in this way – ‘PUSH OFF!’
No families affected by CF want pity or medals for what they go through, it is a part of their daily life; but what they do want is understanding, awareness and vital access to treatments. On June 26, the CF Trust will hold a day of action for Orkambi, a precision drug that treats the root cause of CF. It has been licenced for use in the UK but is not yet widely available on the NHS – so this, amongst many other reasons is why it’s good to shout during Awareness Week, be noticed and wear yellow today.
I like to think Alice knows a book has been written inspired by her, and I am also certain she is proud that her family has already raised £1.25 million for the CF Trust. I hope that my book and CF Awareness Week will help even more people understand this tragic condition. So if you’d like to get involved today, please put on your sunniest yellow clothes or accessories and take a selfie with the hashtag #CFyelfie and tweet or facebook away…
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