Clinical trials - Lola's story
Lola, aged 15, has been on a two-year clinical trial for a modulator therapy for the past 10 months. Here, she tells us about how she got onto a clinical trial and what how it has impacted her health.
Cystic fibrosis is part of my life. I don’t know any different and have grown up doing the same routine of daily treatments. I have to get up early every morning to ensure I have enough time to do my nebulisers, take tablets and have physio before I go to school in an attempt to help me have a ‘normal’ day. I believe cystic fibrosis has made me the person I am today, and it has made me realise to never take life for granted.
Before the trial my health had deteriorated. My lung function was averaging around 45%. I had to have a two-week course of intravenous antibiotics every six weeks, which meant I had to miss more school if I wasn’t feeling well or had another hospital appointment. I felt tired, had no energy and everything was a struggle.
I feel like a weight has been lifted off my chest
My doctor told me that there were upcoming trials, and as my health stabilised from the IVs I could have a chance to participate. The first three months of being on the trial required lots of hospital appointments, but they gradually spaced out. It began as weekly appointments and now it’s not as often. But it wasn’t a problem for us; my CF has meant I’ve always had to visit hospital regularly, so I’m used to it.
The not knowing what the results of the trial would be has been a big part of it too. In the end this is a trial and not even the doctors can predict what’s going to happen.
The best part of the trial has to be seeing an improvement in my health. It’s made my life easier, and I feel like a weight has been lifted off my chest. Because my health is now stable, my family and I can now plan further into the future for holidays and other days out. When I look back, I now realise how poor my health was, even though it didn’t seem it at the time.
Finding out I was 1 of 100 people worldwide taking part in the trial was so exciting. It’s a fantastic opportunity and a chance for me to give something back to not only the cystic fibrosis community but to the NHS. The doctors and nurses who take care of me are incredible and I couldn’t thank them enough.
I had to go through a number of tests to make sure I was stable enough to get on the trial
Actually getting on the trial was the most time-consuming and stressful part. I had to go through a number of tests, called a screening, such as lung function, weight, height and blood samples, to make sure I was stable enough to get on the trial. In that time, I had to stay stable and not get poorly or have additional treatments, which is hard for anybody but even more difficult for people with CF.
Once I had passed the screening it was a relief. My family and I were able to relax a little. I felt eager, I had hope. I wanted to improve my health and gain a better quality of life.
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What is CF?
Cystic fibrosis, or CF, affects the lungs, digestive system and other organs, and there are over 10,600 people living with it in the UK.
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