“You go through so many phases up and down, it’s like being on a roller coaster forever”

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As young people across Europe return to school, we talk to 16-year-old Kitty McFarland about the daily struggles of living with the post-COVID-19 condition (also known as long COVID) and the measures that schools can take to protect their students from its symptoms.

In March 2020, Kitty McFarland was a fit and healthy 14-year-old girl. She enjoyed ballet, paddleboarding, running, and netball. Then she contracted COVID-19.

Kitty remembers only having a cough and a flu-like fever, but her mother Sammie, who fell ill with COVID-19 around the same time, mentioned a terrifying moment when her daughter became unresponsive. Fortunately, these severe symptoms disappeared after a few days and her health seemed to improve. About a month later, the couple attempted very light exercise, but Kitty’s relapse left her bedridden for the next eight months.

“I felt mostly dizzy and exhausted. I often fainted and had heart palpitations; I could just be sitting up and my heart was suddenly jumping to 190 beats per minute,” Kitty explains. She also developed gluten intolerance and severe abdominal pain which caused her to pass out and required several hospital stays.

“Sometimes I needed help to eat all my food; at other times I couldn’t physically lift a glass because I was so weak, which is hard to admit when you’re used to being strong and active,” she recalls. Visual disturbances and brain fog meant that even watching TV or trying to text left her feeling nauseous and exhausted. Meanwhile, her father Scott had to take care of Kitty and her mother as they both struggled with lengthy COVID symptoms.

A condition not recognized at the time

Unfortunately, at the start of the pandemic, due to a limited understanding of the effects of COVID-19, medical staff were unable to provide Kitty and her mother with answers to their health concerns, and the advice they needed. were given – to be more active – only risked worsening their condition.

To this day, Kitty is still struggling due to the effects of the long COVID. “Sometimes I find it hard to speak. My brain is very fuzzy and I can’t think of a sentence. I stutter a lot. Every day is different. Sometimes I will be tired and dizzy, sometimes I feel brain fog, but I can walk with it Sometimes if I’m fine we can go out for a walk but the next day I can go back to bed You go through so many ups and downs it’s like being on a roller coaster for still.

Education disrupted

Kitty’s illness forced her to take a long break from school. Online classes were difficult and the pressure of trying to complete homework led to further setbacks. When in-person education resumed, the strain of trying to cope with the busy school day set back her health even further. Eventually, her family arranged for her to be homeschooled before her exams.

“I had an examiner come to my house, which made my job a lot easier. I could just go back to bed as soon as I had an exam, which really helped.

The path to follow

Kitty and her mother manage their disease with a combination of medication and a careful pace of their activities, but they are frustrated by the lack of progress in understanding and recognizing the disease. In addition to more scientific research on long COVID, Kitty would like more educational flexibility for young people suffering from long COVID – for example, in-person tutors who could work with those who suffer from fatigue and vision problems.

She would also like to see a better understanding of the condition of her peers and teachers.

“Kids think, ‘Oh, I won’t understand. I’m younger, I have a healthier immune system. But it doesn’t work like that. My mother and I were very athletic. We had no underlying health issues,” she says.

Her mother Sammie, who went on to found Long COVID Kids, an international charity based in the UK, worries about the lack of recognition of the long COVID among young people: “We hear stories from families about children taking over the job. education after COVID-19 with increased allergies or continuous headaches, nausea or upset stomach, but their parents send them back to school because they don’t know it’s long COVID. These children are asked to carry on with their normal activities and are not given time to rest. It’s not the fault of the families. It is the lack of education and awareness that is the problem.

As well as calling on schools to make adjustments for students with long COVID, she wants to see measures introduced to improve air quality in educational institutions and more mask-wearing to prevent infections.

“If we don’t, then we will have a whole generation of children who can learn to live with a disability. We are now seeing children who develop long COVID after reinfection, when they did not develop it after their first, second or third infection. With the number of repeat infections, this is deeply concerning. Long COVID Kids called for biomedical research and a focus on prevention.

Increase recognition, research and rehabilitation for post-COVID-19 conditions

The magnitude of the post-COVID-19 state and the long-term burden it is likely to have on healthcare systems is only beginning to become apparent. Studies show that around 10-20% of people who have contracted COVID-19 may have ongoing symptoms for weeks, months or even years after their original infection, which equates to millions of people worldwide. the world.

To date, post-COVID-19 status is not well understood in children and young people and further research is needed, particularly in resource-limited settings, to understand its clinical features, frequency and outcomes. risk factors that lead some juvenile populations to experience clusters of persistent symptoms.

WHO/Europe is partnering with Long COVID Europe, a network of patient-led organizations that has been collecting information about the disease and sharing it with interested stakeholders since its inception last year.

WHO/Europe has also worked with patient groups to identify priority areas where action is needed. He now calls on governments and authorities to focus their attention on the long COVID and its victims through greater:

  • recognition: all services should be adequately equipped, and no patient should be left alone or have to struggle to navigate a system that is unprepared or unable to recognize this very debilitating condition;
  • research and reporting: data collection and reporting of cases as well as well-coordinated research with full patient engagement are needed to advance understanding of the prevalence, causes and costs of long COVID; and
  • Rehabilitation: This cost-effective intervention is an investment in rebuilding healthy and productive societies.
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