smelling the roses
Jessie Ennis says that living with cystic fibrosis can be hard work. But, she tells Joy Orpen, she still manages to lead a rich and rewarding life because she takes her health seriously and always follows doctors' orders
Jessie Ennis (22) is about to start a masters degree in public health policy at UCD.
Not many young people are as well qualified as she is to tackle this subject, and that's because she has had to deal with the consequences of having a chronic health condition all her life.
Jessie, who grew up in Shankill, Co Dublin, was diagnosed with cystic fibrosis (CF) when she was just six weeks old. "Soon after I ended up in hospital with pneumonia and that was very traumatic for my parents," she says. "Usually, CF becomes more obvious later on, but with me it was worse in infancy than in childhood."
According to Philip Watt, CEO of Cystic Fibrosis Ireland (CFI), cystic fibrosis is an inherited genetic disease that causes mucus in the body to become thick and sticky. This clogs the lungs and can cause serious infections and difficulty breathing; it also prevents the pancreas from producing sufficient enzymes to deal with the absorption of nutrients from food. So people with CF are prone to wheezing, repeated lung infections and digestive, weight and growth problems.
Jessie says she had a "lot of stomach issues" as a child. Doctors came to the conclusion that these problems had more to do with her anxiety about having the condition, rather than the CF itself. "It's hard for me to remember exactly what I was thinking, but I know when I was about seven, I began avoiding food because I was anxious I wouldn't have enough enzymes to break it down," Jessie recalls. "But once the real cause of the problem was identified, my mum was able to build me back up again. I've been a big fan of Ambrosia Creamed Rice ever since; even if I was going to a friend's party, they'd put a tin of it in my bag. A lot of people with CF take it; it goes down really well with lots of enzyme replacement pills and helps put on weight."
In the past, life expectancy was severely limited by having CF, but today, given the wonders of modern medicine, it's a whole different ball game.
So much so that Jessie plays sport - lots of it, and it seems she'll try anything; the more exciting, the better.
However, she knows that in order to maintain a good quality of life, she needs to take her health seriously. So she begins each day by using her nebuliser to inhale her medication directly into her lungs. She then takes tablets, rinses out her sinuses and spends half an hour doing physiotherapy-type exercises to clear her lungs. She repeats the routine at night. In the course of the day, she drinks at least three litres of water and goes to the gym about four times a week. She also makes sure she eats really well and that her weight is consistent and appropriate for her height.
She says as far as sport is concerned she has always been quite competitive.
"My mum let me do everything. She never wrapped me in a bubble - she has always been supportive. In fact, doing sport prevents me from getting sick - for example, it helps keep my lungs clear. At school I played basketball, hockey and soccer," she says.
When Jessie left school, she also left home to study genetics. But unfortunately that didn't pan out as she had hoped. "I moved to a flat at DCU, and as time went on I got really, really stressed," she says. "In eight weeks, I only managed nine days of college and I landed up in hospital twice."
Soon after it was discovered that Jessie had become allergic to a particular fungus. "It's a common enough condition in people with CF," she explains. "It was in my lung, so that year I had to take a lot of medication including steroids, and I had to work really hard at gym to regain my old lung function. That was the first time that CF seriously disrupted my life."
However, Jessie did not let the experience deter her in any way. She reviewed her situation and switched to a course that was more manageable, given her particular circumstances.
"I am now able to balance keeping fit and healthy while doing well, academically," she says. And to her great credit, she was recently accepted to do a master's degree in public health policy at UCD.
Another interesting aspect of Jessie's personality is that she is brave enough to take on so many different physical challenges. At the age of 18, she started surfing with a college club. "We went to Bundoran and it was freezing cold," she recalls of her first outing. "But I was in good health then, and managed to stay in the water for an hour without ill effects." The sport remains a passion of hers, and this summer she plans to hit the surf in San Diego.
When she was 19, Jessie went skiing in the Alps. Then, in 2013, she spent the summer in Canada, where she discovered the exhilarations of mountain biking and white-water rafting. But, she says, surfing and the gym remain her mainstays.
Jessie says travelling is more difficult for people living with CF. "In Canada my nebuliser blew up, so I had to call the local CF centre and they were able to help me out. When I go to the US this summer I will take a three-month supply of medicines and medical notes in case I have problems," she says. "When it's hot, I will also take extra salt tablets because my sodium chloride levels are affected by having CF. I also have to be careful to drink lots of water, because if I become dehydrated, the mucus becomes even stickier. I find water is an absolute key component in keeping me well."
CF can also have financial implications. "Because I have a pre-existing condition, travel insurance is quite a lot higher," she says.
But none of that will deter this bright, articulate, amusing and very pretty young woman from leading an immensely fulfilling and stimulating life.
"Whether I like it or not, CF does have a big effect on my life," Jessie says. "But I won't let it stand in the way of doing what I want to do. I want to travel more; I want to get my master's degree and get a good job in Ireland. And yes, I hope to meet a nice man one day and have children eventually."
In the meantime, Jessie is backing the 65 Roses Challenge, which is the main awareness and fundraising event for CFI. It is called '65 Roses' because this is how young children first learn to pronounce 'cystic fibrosis'. People are asked to host their own 65-themed challenge to raise funds for this most worthy organisation which assists its members in so many ways.
For more information, contact Cystic Fibrosis Ireland, tel: (1890) 311-211, or see cfireland.ie