x Abu Dhabi, UAEFriday 28 July 2017

Cystic Fibrosis Trust takes on deadly disease

Abu Dhabi expat Emily Hoyle has lived with a death sentence of cystic fibrosis.

John Hoyle and his wife Emily Hoyle, who was diagnosed with cystic fibrosis - a genetic disease that causes the internal organs to become clogged with thick mucus, making it hard to breathe and digest food. Courtesy Emily Hoyle
John Hoyle and his wife Emily Hoyle, who was diagnosed with cystic fibrosis - a genetic disease that causes the internal organs to become clogged with thick mucus, making it hard to breathe and digest food. Courtesy Emily Hoyle

ABU DHABI // At just 27, Emily Hoyle was told by her doctors that she may not have long to live.

Diagnosed with cystic fibrosis (CF) – a genetic disease that causes the internal organs to become clogged with thick mucus, making it hard to breathe and digest food – Mrs Hoyle knew she had a shorter life expectancy than most.

There is no cure and only half of those with CF will live to 41 or beyond, according to the CF Trust.

Then, after contracting swine flu  from which she never fully recovered, doctors predicted the worst.

“I was told it would be any day,” Mrs Hoyle said, in reference to her experience last year. “I started to plan for my funeral.”

The decline in her health had followed a move home in 2010 after an idyllic three years in Abu Dhabi, working as a relationship manager for Standard Chartered Bank and living with her husband, John.

The couple moved to the Middle East in 2007 and Mrs Hoyle, who had CF diagnosed when she was four months old, loved her life in the sunshine where her condition did not affect an active social life.

Most did not know she had the degenerative condition, which had meant that for much of her teenage years and university days, she was confined to bed and dependent on intravenous drugs to clear her mucus-filled lungs.

She met John after completing her physics degree at Bristol University. She often felt self-conscious about her appearance as a side-effect of the steroids caused her stomach and face to swell up, so when John proposed two years later in India, Mrs Hoyle said she couldn’t believe how lucky she was.

Despite a dip in her health that saw her in hospital for several months, the couple had the “wedding of our dreams” in Cambridge before they began their new life in Abu Dhabi.

After three years in the UAE, they were even considering children before Mrs Hoyle was struck down with swine flu in late 2010 after moving back to the UK.

Her immune system already weak, the flu struck a serious blow to her health and led to a fungal disease in her lungs.

Mrs Hoyle’s health deteriorated and by last year she was seriously ill in London’s Royal Brompton Hospital, where, after witnessing two women on the same ward die, she prepared for the worst.

Mrs Hoyle was told she needed two new lungs and was placed on the emergency transplant list, but she held little hope.

Then, six weeks later and a week after her 28th birthday, Mrs Hoyle got the news she had been wanting.

“The nurse walked into my room and said, ‘Emily’. I knew immediately by her smile what was coming. It was the call,” she said.

Mrs Hoyle had surgery in August last year to receive the lungs of an 18-year-old boy. Although the double lung transplant isn’t a cure, it has added years to her life expectancy and given her a renewed enthusiasm.

“I now spring out of bed and have energy straight away, instead of feeling all the rubbish in my lungs and not being able to move. I feel like I’ve won the lottery,” she said.

To mark her incredible rebound, Mrs Hoyle’s friends in Abu Dhabi are holding a fundraiser for the Cystic Fibrosis Trust in her honour. The White Party is being held at the Monte Carlo Beach Club, on Saadiyat island, on April 26.

Mrs Hoyle’s recovery means she is unable to travel for two years, so she will miss the event, although husband John will attend.

“I wish I could be there but I will be there in spirit,” she said.

Tickets cost Dh600 and the event will begin at 8pm with drinks, canapés and entertainment. Guests will also have the option to buy a seat at a VIP table.

For information, email info@thewhitepartyabudhabi.com

The National reported last year how Dr Wael Rabeh, a professor at New York University Abu Dhabi, had discovered a treatment for cystic fibrosis that had the potential to help between 50 and 80 per cent of sufferers.

jbell@thenational.ae