My CF Journey

I was born on the 19th April 1995 and for a few weeks, I was just like any other child. I just so happened to be born in one of the few areas in the UK at the time trialing the 'Guthrie' test, a heel prick test that can be an initial detection for conditions like Cystic Fibrosis. This showed signs that I might have CF, and a sweat test later confirmed that I did. I was the second child and as there weren't any problems when my brother Alex was born, my diagnosis was a big shock to my parents.

 

Mum, Dad & Alex

My wonderful mum is a Neonatal Intensive Care nurse, looking after very ill babies, often born prematurely. As a professional in the medical world, she knew about CF but only the very basics. When I was born, my amazing dad delivered parcels and certainly didn't know anything about CF at the time. My brother Alex has grown up with CF as a part of our family life and has never treated me differently because of it. Although I do stand-up comedy now, Alex was always the one to make me laugh when I was a child and I always felt very proud of myself when I made him laugh.

18-09-07 family.jpg

 

Treatment

Like most people diagnosed with Cystic Fibrosis at birth, treatment for me is just a part of my life and always has been. I've never not had to take tablets when I eat food and I've always had to do physiotherapy in the morning and night. I'd feel very lost without my treatment routine, like something was missing. For the first 7 years or so, my parents did percussion with me lying on 'the wedge', a soft triangle thing that, when turned upside-down, made an amazing seesaw! Then I moved onto the PEP Mask, which I've been using ever since. There are so many different physiotherapy methods to choose from, but the PEP Mask works for me and I feel very attached to it. I was brought up to comply with my treatments very strictly, never let off on birthdays or at Christmas, and I've taken that on board as I handle my CF lifestyle independently.

Alongside my CF treatments, my parents pushed me to exercise regularly by signing me up to the local swimming club with my brother. Swimming was a big part of our lives when I was younger, especially for my brother, who often did very well at club championship races and other galas. I never particularly liked swimming; I never felt very good at it, no matter how hard I tried. This lead to training with people half my age and ultimately to me leaving swimming behind in 2011.

 

Running

Exercise wasn't something I cared for, I knew it was important but it felt more like a chore than anything else. In 2012 however, my physiotherapist introduced me to the Couch 2 5K program, designed to help people go from not running at all to running 5km in 9 weeks. I completed the programme with my mum and finally found a type of exercise that I enjoyed and that made me feel confident. A hospital trip a couple of months later made me stop running, but I picked it back up at the start of 2014 and haven't stopped since. I've run many 5km races, a few 10km races, two half marathons and the London Marathon in 2015. Starting to run is one of the best decisions I've ever made and my parents are now also keen runners themselves!

18-09-07 running.jpg

 

Hospital

Generally speaking, I was extremely well when I was younger, with most chest infections being easily treatable with tablets and no other huge complications. I was very lucky to avoid going into hospital until I was 11 years old and have only ever been in for a total of 19 weeks since, which may sound like a lot, but is actually a very good track record! My first hospital stay was incredibly scary and I can remember bursting into tears at swimming club because I was filled with so many nerves. I cried again on my first night because I was just so upset about having to be in. Fortunately, each time has become easier and easier and now I get to stay at the Wolfson CF Centre in Nottingham, which is an amazing, modern facility and feels more like a hotel than a hospital.

 

Vicky

At the start of 2015, I started dating Vicky. I met her at university and had been friends with her for a year and a half before that point. She knew a bit about my CF, but not a lot, so I remember sitting her down and telling her everything about it. When I finished she said "okay", and it didn't change whether she wanted to be with me or not. I had to go into hospital twice in the first 6 months of our relationship which was very scary for her because it was the first time she had seen my CF pushed into the forefront and be completely dominant for two weeks. Despite all of that, she's always been by my side and supports me in so many different ways. Aside from making me feel excited and confident about the future we have together, she has adopted all of the everyday aspects of my CF into her life. She stays up with me every night when I do physiotherapy, she reminds me to take my tablets, and she motivates me to go for a run when I need her to. She's the perfect person for me to spend the rest of my life with and I love her more than anything.


I've been very lucky so far with my Cystic Fibrosis. My parents strictly enforcing my treatment from an early age benefitted me tremendously and having a supportive family has always kept me going. I try my best never to let CF stop me living the life I want to and I'm very grateful that it's been something I can manage with relative ease.

William MarlerWilliam Marler