With 5.4 million people in the UK currently being treated for asthma and 200,000 for severe asthma, we decided to hear how our members are coping and what can be done to make managing this condition easier.
Asthma is a lung disorder which is characterised by the narrowing of airways due to inflammation and tightening of muscles. This creates symptoms such as breathlessness, wheezing and coughing which can vary in severity from person to person.
“I’ve got no energy on a day-to-day basis”, says Brian Mayne who found out he had asthma in early 2019. “I’m always putting off tasks until tomorrow, and then tomorrow comes and I think I’ll do it the next day. I just feel constantly drained.”
Coughing and shortness of breath are not only tiring, but can also reduce oxygen levels in the blood creating fatigue. Paul Cook, who was diagnosed in 2008 explains how he is also struggling with tiredness and exhaustion.
“On a daily basis, I find it very difficult to bend or do anything strenuous. The grass wants cutting, I’ll do half of it and then I’ll need to have a rest and get my breath back. If I go into the loft to get something, by the time I get up there I need to have rest,” says Paul.
In some cases, the effects of asthma can be more extreme and even life threatening. In the UK, an average of 3 people die each day due to asthma, and every 10 seconds someone is experiencing a potentially life-threatening asthma attack.
Triggers that can worsen asthma
Periods of worsening of asthma symptoms are often caused by triggers, which can be anything that irritates the airways. This includes emotions, weather, stress, chest infections and many more.
“I think my biggest problem is that I’m very susceptible to chest infections, and that of course aggravates the asthma. Certain types of pollen seem to cause me to pick up a chest infection, or if I’m around somebody that has a cold,” says Beryl Black who has been adapting to life with asthma since she was a child.
Paul Cook who has kept a diary since his diagnosis shared that “exceptionally hot or cold weather triggers me. Also, when I get stressed and worked up about something, I immediately find I can’t breathe properly.”
Asthma UK offers information on how to recognise and deal with asthma triggers. This includes taking preventer medicine, using an asthma action plan and attending your annual asthma reviews. Understanding triggers and knowing what help and support is available is extremely valuable for managing this condition.
Greater Awareness of Help and Support is Needed
Asthma UK, the British Lung Foundation and the NHS all provide services and advice for living with asthma, but many people remain unsure of what’s available for them.
“I think what is available isn’t publicised very well,” Paul Cook tells us.
“A few years ago, I participated in pulmonary rehab provided by the NHS, which I heard about by chance through my wife’s friend. Nobody had mentioned it to me before that, so next time I saw my nurse I asked her about it and she referred me. The techniques I learnt helped me to breathe and it was very confidence building,” continues Paul.
A common way in which people seek advice and support is online. Forums, Facebook groups and other virtual communities offer patients the opportunity to share their experiences and advice, as well as connect with those who are experiencing similar challenges.
Coralie Stephney, a member of the British Research Panel who is living with severe asthma has gained much advice on her condition from an online community.
“I use a couple of devices that help to exercise my lungs which I found out about on the website. The AirPhysio I blow into twice a day helps with my breathing. I found out about these things by myself and then looked into it more. It was mostly the site that made me aware of ways I can manage my asthma,” explains Coralie.
For those who have access to the internet, the information available is endless. Finding relevant and useful information can be daunting, however specific advice from GPs at annual check-ups could help to guide patients in the right direction.
I feel like it would be valuable to receive some information at the review of what sorts of things I could do to keep a reasonable standard of living with my asthma
Clinical Trials as a Solution
“At my last annual review, I was 58% lung capacity, so I feel like it would be valuable to receive some information at the review of what sorts of things I could do to keep a reasonable standard of living with my asthma,” explains Paul Cook.
Having information packets and concise guidance at GP annual reviews could help provide patients with initial guidance on what to do and where to go. Understandably, GP’s time and resources are limited, hence clinical trials can offer a solution to some.
Through participating in clinical trials, patients receive expert guidance from medical staff, as well as improved knowledge of their own condition. Nurses attentively guide patients to participate, whilst also offering expert advice.
As well as providing advice and support, participating in clinical trials also provides the opportunity to try the latest treatments and contribute to advancing research.
At the British Research Panel, we are currently helping to find participants for a trial that will test a new treatment for asthma.
It is our hope that a better treatment can be found that will improve the lives of those living with asthma. To read more about this study and how you can sign up, click here.
In addition, we would like to hear any issues you would like to raise regarding your experiences living with asthma. If you would like to get in touch and share your story, then please write to email@example.com.