Respiratory disease advocate living with severe asthma

Eve Smyth, 64 at the time of writing, is blind and was diagnosed with asthma as an adult, and has experienced a steady worsening of her symptoms over the years. Although it has made life more difficult for her, especially during the time of the COVID-19 pandemic, it has left her determined to do what she can to help others with asthma and other illnesses. respiratory.

Although she has lived in the UK (near Glasgow) for more than four decades, she is American by birth and grew up in Southern California, an hour’s drive from Los Angeles. “I can still remember how smoggy it was around LA back then,” says Eve Respiratory Medicine The Lancet. She was bused to and from the school she attended for blind children, often coming home with a tight chest and unable to explain the feeling to her parents. “It was probably the onset of asthma,” she recalls. She has also always suffered from bad symptoms of hay fever and allergy to cigarette smoke, but it was not until she was expecting her first child at the age of 25 that she suffered her first attack. of asthma. “I remember freaking out and having to go outside to get some fresh air,” she recalls. However, it would be another 8 years before Eve was officially diagnosed with asthma.

Like many other people with the condition, there can be multiple triggers. Cigarette smoke, paint fumes, smog, pets – a range of things commonly associated with allergies. “I always check to see if someone has animals before I visit them,” she says. “And people have been very understanding and tolerant overall over the years, although of course there have been some incidents!”

Several people played key roles in helping Eve deal with her situation. First, her husband of 41 years, Adrian, who has been her rock in more ways than one, helping her navigate safely away from anything that could trigger an attack. Second, the asthma nurse in her general practice, who has worked with her for over 30 years. “Because I’m blind, I obviously can’t use a written plan, so my nurse Sandra talks to me about everything I need to know; for example, when changing medications, and helped me distinguish an asthma flare-up from a lung infection. Truly, I have been so lucky to have treatments like this with the same person for so long. Her nurse also provided a touch strip for the peak flow meter Eve uses to measure her lung function, so she can interpret the results despite her blindness.

Eve always knows that when a cold comes, a flare-up will follow. She currently manages her asthma with Trelegy Ellipta (a combination treatment containing flucitasone furoate, umeclidinium bromide and vilanterol trifenatate, more commonly used in the treatment of chronic obstructive pulmonary disease). This medicine was recommended to him by his asthma consultant at the hospital. She also uses montekulast maintenance therapy and an inhaler called Bricanyl (containing terbutaline sulfate) to relieve the flare-ups. “I can’t use Ventolin inhalers like most asthmatics because I’ve found they can trigger migraines,” she explains.

Although the activities of daily living present challenges – for example, she does most of her shopping at the supermarket online rather than dealing with the hassle of going in person – she tries to lead as normal a life as possible. “We like going to restaurants, I just have to be kind of prepared for anything that might trigger my symptoms,” says Eve. She and her husband don’t go on vacation as much as they used to, especially in these times of COVID. For exercise, Eve always likes to dance. “With dancing, I can do it in a controlled indoor space in my home, not worrying about anything triggering an attack,” she explains.

Far from being a passive observer as the COVID pandemic took hold in Scotland and beyond, Eve wanted to make a contribution to research that makes a difference. In this capacity, she is part of the EAVE II research collaboration based at the Usher Institute at the University of Edinburgh, UK, which uses patient data to track the COVID-19 pandemic and the vaccine effectiveness across Scotland. She is part of the public advisory group that advises researchers, giving them essentially that: the public’s perspective on research.

In November 2021, the EAVE II collaboration, whose authors include Professor Aziz Sheikh and Sir Lewis Duthie Ritchie, published an important paper (see panel). “We wanted to provide population-level evidence to the UK Joint Committee on Vaccination and Immunization (JCVI) on the risk of serious consequences of COVID-19 for children with asthma in Scotland,” says Eve. “This was the first nationwide study to look at this question. Because asthma is so common, we wanted to understand whether some children with asthma were at greater risk than others of becoming seriously ill with COVID-19. This should help inform children with asthma who may be prioritized or encouraged to receive one or more doses of a COVID-19 vaccine in the future.
Panel
Main results of the study
  • Children with a history of hospitalization for asthma were more than 6 times more likely to be admitted than children without asthma. They were also more than 4 times more likely to be admitted than children with better-controlled asthma.

  • The children having two or more courses of prescribed oral steroids in the previous 2 years were 3 times more likely to be hospitalized than children not taking oral steroids during the same period.

  • children with poorly controlled asthma were more likely to be tested and admitted to hospital with COVID-19. This is compared to both children without asthma and those with better controlled asthma.

This research – which comes at an absolutely vital time as the UK and other European countries decide the relative risks and benefits of vaccinating children against COVID-19 – shows that children aged 5 to 17 have a 3-6 times higher risk of being admitted to hospital with COVID-19 if their asthma is uncontrolled, compared to those without asthma.

This equates to 9,124 children in Scotland, including 1,962 teenagers aged 12 to 15. When extended to the rest of the UK, there are more than just under 110,000 children with uncontrolled asthma who should be considered a priority for vaccination against COVID-19. This includes 23,544 children between the ages of 12 and 15.

As this interview went to press, the JCVI announced that clinically vulnerable children between the ages of 5 and 11 would now be eligible for vaccination with the Pfizer-BioNtech vaccine, although the JCVI did not specifically state which children would be included as clinically vulnerable other than those who are immunocompromised or who live with an older child or adult who is. Asthma was not specifically mentioned as a condition that would make a child clinically vulnerable.

“The results of our study are as clear as day,” says Eve. “Children with asthma should be vaccinated first. And now that younger children are eligible, younger children with clinical vulnerabilities such as asthma should also be prioritized,” says Eve. She hopes the Scottish Government, which has devolved responsibility for health matters from the UK Government, will also take these findings into account in its forthcoming action plan on respiratory care.

Eve’s interest in this particular research project stemmed from the fact that it was a living and ongoing pandemic and as such further quality research is needed to learn more and quickly. . However, she has been a reviewer of research applications for Asthma UK for over a decade, again giving the patient perspective on questions as simple as ‘will this research be of use to patients with this disease? ?”, and providing context for researchers. . “I also reviewed doctoral files, scholarship applications, projects at scientific meetings…all sorts of things,” she explains.

“It is so important to advocate for respiratory disease because even today, in the 2020s, lung disease is not taken seriously. A lot of people assume that anyone with a respiratory problem is a smoker, there is a stigma attached to respiratory problems,” she says. “Society needs to take all respiratory diseases more seriously. And learn the lesson I’ve learned throughout my life: don’t take your breath for granted.

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