How were you diagnosed with cystic fibrosis, and what were your symptoms?
I was diagnosed by the sweat test. People with CF have more chloride in their sweat than people who do not have the condition. If the test shows an amount of chloride over a certain level then you are diagnosed with CF.
At what age were you diagnosed?
I was 18 months and showing the traditional signs of CF: salty skin, a distended belly and sticky mucus, which was hard to cough up. It was the worst thing that could have happened to my parents. My mum packed up and took me to New Zealand for six months to be closer to my uncle, who is a doctor there.
What have you been told about your prognosis?
It is better now than what it was when I was a child. My prognosis at the moment is good. I have good lung function, my vitamin levels are acceptable, and I do lots of exercise and stay healthy.
What treatment do you have?
I can’t digest my food so I take eight enzyme tablets (called Creon) every time I eat a meal. The number of tablets I take depends on the fat content of the food, but I have to take them with everything. I also take vitamin A and D supplements, as well occasional antibiotics to fight the lung infections I’m prone to picking up.
Every morning when I wake up I take a nebulised enzyme called DNASE to soften the mucus in my airways, then I do 30 minutes of physiotherapy to clear my lungs. I will always have to do this. It is also very important that I do regular exercise so I go to the gym or run almost every day. This all helps keep the mucus in my lungs moving, which reduces the number of infections I catch.
Are you happy with the NHS care you have received? Could any aspect have been improved?
The NHS care I receive is always amazing. I am a patient at the Royal Brompton Hospital in London; their team is the best, especially Dr Nicholas Simmonds, my specialist. They are so informative and caring and I really couldn’t ask for more. Two years ago I was admitted to hospital for a fortnight to treat a lung infection. I was cared for so well, kept informed throughout the whole process, and they made the best out of what should have been a very miserable couple of weeks.
Were you given any information on clinical trials investigating new therapies for CF?
I am often asked about ongoing research projects and whether I would like to take part.
Would you consider taking part?
I would like to think I would take part in a clinical trial, but I am reluctant to put my health on the line, as it is so good at the moment. However, I do know how important they are.
It would really depend on what it was and the guarantee that it wouldn’t be detrimental to my health.
What do you find the most difficult aspect of CF?
For me, the most difficult aspect is the physio. It is very time-consuming and can be difficult to fit around my daily life. It is fine when I am at home and in a routine, but if I go away or other things crop up it can be a pain.
Has the condition impacted your lifestyle?
So far, I have not let CF impact on my life too much. I accomplish everything I want to do. I travel regularly, I walk up to eight miles a day, I ran a half marathon recently and I am hoping to do a full marathon next year. It can be difficult to make sure I can take my nebuliser every morning when I am away from home, but I do my very best to follow through on all the treatments I’m given and take all the medication. This is critical to long-term health.
Do you think the depth and quality of information offered to CF patients in the UK is adequate?
With social media and the internet, there is a lot of information at our fingertips. The thing that I find most useful is information from people with the same condition, however, because sufferers of CF are not allowed to meet in case they pass infections to each other, this can be very tricky at times.
I have just been interviewed for a YouTube video about my CF called Patient Perspective: Cystic Fibrosis, and I hope it is useful for others with the disease to be able to see someone else with the condition talking about it. The information we get from the doctors and online is great but there is nothing like hearing it from the perspective of the patient.
What are the key challenges facing patients with CF?
We face the same challenges as anyone else growing up but with the added strain of trying to stay as well as possible and never knowing what the future holds for us and our health. Also, because it’s an ‘invisible’ condition, people don’t realise you have it and so they smoke around you, often commenting that you are coughing a lot.
What message would you give patients newly diagnosed with CF?
My message would be to not give up. Make sure you do exactly what you are told by the doctors and don’t cut corners. The more you look after yourself the more chance you have to stay healthy. Exercise as much as you can, even if that’s not a lot at the beginning. Eat well, do your physio and take your tablets.
What is your greatest hope/fear for the future?
My greatest hope is that they find a cure for CF in the not-too-distant future and that everyone born with CF is able to live a happy and healthy life. I try not to be fearful and take every day as it comes, and I am so lucky to have reached the age of 31 and be as well as I am. I like to think of the positives.
