BYNUALA MCALOON
Sixteen-year-old Lisa Meehan from Enniskillen exudes the model image of health and beauty.
Fun-loving, upbeat and pleasant to talk to, it's hard to imagine that behind her flawless exterior, the St. Fanchea's College student is in fact battling with one of life's most isolated diseases.
Diagnosed as a baby with Cystic Fibrosis (CF), the UK's most common life-threatening inherited disease, Lisa has grown accustomed to lengthy daily therapy, gruelling treatments, and regular stints in hospital to keep the illness at bay.
Cystic Fibrosis affects 600 babies, young children and adults in Northern Ireland. It develops if both parents carry what is known as a faulty gene, giving a baby a one in four chance of having the disease. It affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus which in turn makes it hard to breathe and digest food.
One in 20 people in Northern Ireland carry the faulty gene, that figure being higher here than the overall UK average.
There are varying degrees of the disease's severity and, while treatments may have improved, there is still no cure. The average Northern Irish life span is 31.
Yet, CF remains a largely unrecognised illness.
While it can prove to be hard work, severe and frightening, Lisa, her mother Georgina, and 14-year-old brother, Caimin, have adopted an extremely positive and determined attitude to the illness which has meant that, despite numerous health scares, Lisa continues to enjoy life to the full.
"Lisa was six weeks premature," Georgina explains. "She was in an incubator for a few days but got out in the normal five days because she had gained weight. About a fortnight after she came home, I noticed she hadn't been that well, particularly with urine infections. The Health Visitor made regular visits to check her weight, but she wasn't gaining any so, at about three weeks she was admitted to the Erne Hospital and underwent lots of tests to determine why she hadn't been putting on weight.
"This went on until Lisa was nine weeks old and, during those nine weeks she had become very ill, so was sent to the Royal for a sweat test, and that's when it came back that she had Cystic Fibrosis."
Georgina had a friend who had CF, so, while she wasn't completely new to the disease, the news still came as a major jolt.
"My initial reaction was shock. I was scared because I had seen what my friend had been through in previous years, basically coughing her lungs up. It was just constant illness with her, so I knew what was in store for me.
"I was in shock and didn't want to hear it, but, thankfully the nurses in the Children's Ward were very supportive and talked me through it. They advised me to treat Lisa as a normal child and she will grow up that way, and, so that's what I have done."
Lisa's main symptoms include constant chest infection and bowel problems, as well as weight loss. Every three months, her chest is in particularly bad condition, and she has to attend the Royal Victoria Hospital in Belfast for a period of 10 days up to two weeks for intense physiotherapy and IV antibiotics.
"A lot of preparation work", Georgina explained, "has to be done before Lisa's treatment because she's allergic to most of the IV antibiotics due to constant use for many years,"
"Staff have to give her steroids before administering the IV's because Lisa has had quite a number of episodes where she has had reactions like severe rashes to the skin, burning sensations in the hands, and on one occasion, she went into a semi-coma."
The process is lengthy and gruelling.
"When I wake up," Lisa explains, "I get a Ventolin inhaler, it's a treatment that helps release the mucus of the airways more. Because mucus sticks to the chest wall, the DNA's helps to moist it so it's removed easier.
"An hour later, I get another type of inhaler. Then I get physio for 20 minutes. I then get another inhaler, an antibiotic.
"At 12 o'clock I get another tablet and then at two, I get IV antibiotics. I get more physio then, and I get IV again at nine at night. It is the same process every day for the 10 days."
Back at home, while the process is not as intense, the routine is no less pressurised.
"Because of her treatments at home, Lisa doesn't actually start school until 10 o'clock," Georgina says. "The (Western) Board has been brilliant in allowing her to do that. Lisa gets up at eight and inhales her first nebuliser. She then has to wait an hour before she gets Ventolin, and by that stage it's nine. And straight after, it's pyhsio."
This is something Lisa administers herself.
"Instead of physical chest physio, I have a pep mask which I breathe into. I push out the air for 10 breaths, then do a huff, and a cough for 10 seconds."
If however, Lisa is very chesty with the mucus, Georgina takes over and does physical physio.
"Then I take the next nebuliser. Then it's my oral medication, antibiotics, vitamins and so on.
"And then its breakfast time," she laughs.
Lisa has a further physio session during school hours, and another one before she goes to bed at night.
To ensure a constant weight, Lisa was tube fed for seven years. And, when a gasterectomy tube was being removed last October due to Lisa's healthy weight gain, it too presented its difficulties.
Indeed, Lisa and her family have had a number of scares down through the years.
"I think the scariest part was when Lisa used to have very bad bleeds, coughing up blood. It was actually the lining of the lungs that caused the bleed and she had to go for surgery to repair the lungs last May".
Georgina says the constant journey to and from Belfast can be quite difficult as is the constant worry of hospital bugs, such as MRSA.
"Every parent obviously worries about their child going into hospital but, with CF patients, because they are so prone to infection, you are more aware, and that would be my worry at the minute with all the stories of infections."
Emotionally, Lisa is determined to live as normal a life as she can. However, mum Georgina admits that for those not used to the disease, it can be hard to explain.
"Growing up with Lisa having CF, it's second nature to us, but it can be hard for others to see. When you go to explain it, people can't understand how much work has to be done because Lisa can look so healthy. But, it's only when they actually take ill that it hits people. It's the inside that people cant see."
Georgina is also keen to point out that it is 'not all doom and gloom' and, for anyone newly diagnosed with CF, there are varying degrees of the disease and increasing improvements in the range of treatments.
As for Lisa who is currently preparing for her GCSES, and hopes to pursue hairdressing, she won't let the illness stand in her way.
"Even though I have all this other stuff to worry about, I just try to live life to the full, go out and do what everyone else does."
This is an attitude shared by her mother.
"You do worry about your child especially when they become ill and deteriorate but in my experience with Lisa, she is very resilient with her treatment, and she always comes back full of life again. She is very positive and will face anything. She has got a: 'this isn't going to get me down' attitude. She's a real wee fighter, and is very determined."
