Why I’m not afraid of COVID-19 (or cystic fibrosis)
These are difficult times, particularly for those living with chronic illness. Here, Evan Scully, who has CF, shares his inspiring story…
‘I don’t feel vulnerable health-wise’
‘Some people are not taking this seriously’
EVAN Scully has always defied the odds. At birth, diagnosed with cystic fibrosis, his parents were told he would live until ten years of age; at ten years, they were told he would live until 18 years. Today, he is 33, and lives happily with his wife Yasmina in their home in Navan. And it’s clear he has a lot more living to do.
Despite living with Delta F508 — the most deadly strain of cystic fibrosis — he is in peak physical condition, with a fitness level most people only aspire to.
But it doesn’t come easily — in fact, it’s all as a result of pure dedication and hard work. Evan runs between 30-40km five days a week, and on the remaining two days, he goes for a cycle on one day and to the gym on the other.
In terms of managing his CF, Evan uses an inhaler, and takes digestive enzymes and vitamins but, without regular exercise, his lungs start to fill up with mucus.
It’s clear that for Evan, exercise is his life-saving physiotherapy.
‘When I was a child, my parents worked obsessively to keep me alive,’ he explains. ‘Sessions of daily physiotherapy, clapping my back six times a day for a half an hour at a time. Turning me upside down to clear the mucus. They always made it fun— calling it tickly time,’ he smiles. ‘I never felt a burden. The whole family — my siblings included — got involved.’
‘Now, running is actually doing that work. Think of hitting the bottom of a ketchup bottle to get the sauce out. When I’m pounding the pavement, that’s kind of what’s happening to help clear my lungs.’
And as the family normalised his illness, Evan never questioned his abilities or limits. He fell in love with running at the tender age of four, and never missed school or ‘pulled a sickie’ as it would mean he couldn’t train.
‘I joined a running club when I was about 11. I remember one of my first races in Gorey, where we had a holiday home. It was a ‘run till you drop’ event. I just kept running and the problem was, I didn’t feel the need to stop, long after everyone else had. The organiser had to tell me to quit as they wanted to go home,’ he laughs at the memory.
This tenaciousness held him in good stead — and instilled a precision-like focus on living the best life he could have.
‘I want to be the best at anything I do,’ he says. ‘Running, making coffee, omelettes, whatever. It’s all about what goals you set.’ However, while training competitively, he suffered a couple of seizures while out running at the end of 2012, and his plans changed.
But this didn’t stop him aiming high. He studied sports therapy and traditional Chinese medicine and, after leaving college, set up the Scully Therapy Clinic, incorporating a gym and therapy rooms.
In his clinic, he offers a holistic approach, from physical therapy to acupuncture. His clients range from office workers to Olympic champions, including some who had been due to go to Japan this summer.
In fact, to date, he has worked with some 36 Olympic medalists and over 200 Olympians to date.
Evan, who has never been hospitalised, admits it’s his ‘greatest nightmare’. As somebody who has cystic fibrosis, he is somewhat familiar with the idea of social distancing, to prevent cross-infection. People with CF grow bugs in their lungs which are usually harmless to those who don’t have the condition, but can be easily transmitted from one person with CF to another and be very harmful.
‘That’s why you’ll never see two people who have cystic fibrosis at the same event,’ he explains. ‘No two people with the condition could be put on the same hospital ward, for example,’ he says. ‘Cross-infection is a huge risk.’
But he remains pragmatic when it comes the threat of Covid-19.
‘I’m not afraid of Covid-19. I’m taking all the precautions, I’m not working with people until it’s deemed safe to do so. I’m still running my coaching business online and sharing lots of tips through videos on YouTube and podcasts on different platforms. It’s actually a good time to be creative.
‘It’s hard to not let it affect you, but I really try not to be anxious about it, as stress lowers your immune system, and that makes you more susceptible. Chances are, I’m not going to get it. I don’t feel vulnerable health-wise as I do my utmost to stay as healthy as possible,’ he says.
‘I’ll run twice a day as it tends to break things up — not necessarily outside; I have a treadmill in the garage. I’d like to see a lockdown though. It angers me to see kids in groups and coffee shops packed, like this is a holiday. We have an opportunity to control this, and some people are not taking it seriously.’
According to CF Ireland, having the condition does not make you more likely than anyone else to catch coronavirus, but those with are more ill with CF are likely to be more affected. A statement on cfireland.ie reads: ‘At the moment we don’t know how infection with COVID-19 will affect people with cystic fibrosis. In those who are well it may be a mild illness, but those with significant chest problems are likely to be at risk of more severe illness.
‘Everybody with CF is a unique individual and their circumstances will vary.’
Evan, who doesn’t have any hospital check-up appointment until May, says the only time he leaves the house is to run, and his wife is the one who does shopping or goes on errands for the couple. He is now on less medication than when he was younger, and continues to takes a holistic approach to his health, which can be difficult at times like this.
‘People tend to snack on sugar with boredom or stress. I’m switching my focus to healthy distractions, like meditation. Dietwise, I try to stick to a mostly
vegetarian one, I probably eat meat twice a week.’
He remains upbeat about his future as, although any of the CF treatments currently available won’t help the type he has, he is eligible for the latest groundbreaking therapy Trikafta, which is currently under review by the European Medicines Agency. And although he and Yasmina have had to postpone their dream honeymoon to Maldives for the foreseeable future, he is hopeful that the global situation may have improved by the time they are due to celebrate their second wedding in Morocco, where Yasmina is from, at the end of June.
Evan is an inspiration, and is sharing his story as part of Cystic Fibrosis Ireland’s annual fundraising appeal, 65 Roses Day — which was due to take place on Friday April 10, and now gone virtual, with public fundraising replaced by an online appeal due to Covid-19.
Evan is very aware that there are many people struggling with the condition he has and unable to live the quality of life that he does.
He is deeply concerned about the lack of facilities for people with cystic fibrosis in Ireland, which has more than 1,200 people living with the disease – the highest incidence in the world.
‘Our cystic fibrosis facilities are not up to par. When you think that most of those 1,200 people will need hospital treatment, and there’s so few beds available with long hospital delays… we desperately need more in-patient facilities and beds, so please support this cause.’
This year, due to coronavirus/ COVID-19, Cystic Fibrosis Ireland’s 65 Roses Day has gone virtual. Please support Cystic Fibrosis Ireland on 65 Roses Day, Friday 10th April, by donating online at 65RosesDay.ie or by sending a text 65ROSES to 50300 to donate €2.