Emma’s determination helps her live the dream

8:09am Thursday 10th April 2008

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CLAIRE BOTTOMLEY talks to cystic fibrosis sufferer Emma Young her bid to live a life like everyone else.

WHEN Emma Young sashays on to the catwalk for the finals of the Miss York contest this month, she will be following the same philosophy she's had her whole life - go for it.

The 21-year-old beauty from Pickering is not one to give up on her dreams, and has never let the fact that she has cystic fibrosis stand in her way.

When she was nine months old, Emma was diagnosed with the serious genetic condition, which gives sufferers a range of health problems and a shorter life expectancy.

"Mum knew there was something wrong because I wasn't putting any weight on, I was undernourished because I wasn't absorbing food properly," she said.

Emma has a twin sister, Lisa, who doesn't have CF. "Mum was feeding us both so much and I was still losing weight and Lisa was getting bigger and bigger."

Cystic fibrosis is an inherited condition caused by a faulty gene. If both parents are carriers, there is a one in four chance their child will have CF. Emma and Lisa are a very rare case, as both twins usually have the illness.

The gene controls the amount of salt and water that can move between cells in the body, and in those with cystic fibrosis, the amounts are uneven.

The faulty gene allows too much salt and not enough water into cells, which results in a build up of thick, sticky mucus in the body's tubes and passageways. These blockages damage the body's lungs and digestive system, resulting in inflammation and repeated infections.

Emma, a former Lady Lumley's pupil, has to take pig enzymes in a pill form called creons to help her digest food - up to 12 with a big meal.

Like all CF sufferers, she has to do physiotherapy, twice a day. "I lie on a slant so my hips are above my head so it drains the lungs. I take deep breaths and pat myself on the back," she explained. "It means I can walk around and talk easily otherwise it would build up and I literally couldn't move."

She goes to York District Hospital for an intensive course of intravenous antibiotics every six to eight weeks, but she also has a port-a-cath - a piece of metal placed inside her skin - which provides access through a needle to administer drugs, allowing her to treat herself at home, giving her much-valued freedom and flexibility.

"You can lead a normal life," said Emma. "You've got to not let it get in your way as much as possible. Sometimes it's very, very difficult just to walk around the house. Walking upstairs can leave you out of breath but you've just got to catch your breath and keep going."

And that's exactly what she's done. Quite unusually for a sufferer, she holds down a job in a beauty salon, doing work she loves and spent two hard years at college to qualify for.

"I am very, very lucky, I have a boss who accommodates me really well," she said. "If I'm not well she'll make my day easier and if I have to go to the hospital at short notice she understands. Some CF sufferers can't find a boss like that."

And as well as the dream job, she has the dream boyfriend, David, 25, a joiner and retained firefighter, also from Pickering. "We've been together for four years and he helps with physio and takes time off work to drive me to hospital appointments," she said. "He's fantastic."

She and twin sister Lisa are also very close. "She's very over-protective of me and takes good care of me."

Emma admits that there are aspects of her life which are inevitably affected by CF. "I'd like to work full-time but I can only work part-time. I'd like to earn lots of money, but I can't do that."

And although she loves her home town, she admits that being in a rural location a long way from hospital can be hard. "When I'm poorly it's almost impossible to catch the bus because I have to get two and that's really hard work when you're out of breath, and I don't drive. My family help, my mum especially, and David," she said.

Overall, however, Emma is positive about the future, and values everything in her life intensely. "Hopefully I will continue to stay as healthy as possible and that will help me to lead as normal a life as possible. I just want to keep working, go on holidays and do normal things," she said.

And if her forthcoming appearance in the Miss York finals goes any way to raising awareness of cystic fibrosis, Emma feels this can only be a good thing.

"A lot of people don't have a clue what it is, then the odd person surprises you," she said.

"I think there needs to be much more awareness. Just up until recently I was having to pay for my medicines every year because it's classed as a childhood illness, so adult sufferers are not exempt from prescription fees. There are a lot relatively small health problems that make you exempt and I really think there needs to be a change in the law. I am only exempt now because I've developed diabetes."

She added: "I thought entering the competition would be a lot of fun and I have always wanted to give it a whirl.

"It's the first time I have had a go and I'm stunned that I'm through to the finals. I never in a million years thought that I would get this far."

One thing's for sure, she will have a strong base of support in the competition, which she has the good looks and personality to succeed in. All she has to do is go for it.

Facts about cystic fibrosis

* Cystic fibrosis is the UK's most common, life threatening, inherited disease.

* There is currently no cure for cystic fibrosis.

* Cystic fibrosis is not contagious it is a genetic disease.

* The defective gene that causes cystic fibrosis was found in 1989.

* It affects vital organs in the body, especially the lungs and digestive system, clogging them with sticky mucus, which makes it difficult to breathe and digest food.

* Cystic fibrosis affects over 7,500 people in the UK.

* Of the people with CF, 50 per cent are under 15 and 70 per cent are under 20.

* In the UK, 2.3 million people carry the faulty CF gene - one in 25 of the population.

* If both parents are carriers of the faulty gene, there is a one in four chance their child will have cystic fibrosis.

* Each week five babies are born with cystic fibrosis.