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In March 2020 Kitty McFarland was a fit and healthy 14-year-old. She enjoyed ballet, paddleboarding, running and netball. Then she contracted COVID-19. Kitty remembers experiencing only a cough and flu-like fever, but her mother Sammie, who became ill with COVID-19 at around the same time, mentioned a terrifying moment when her daughter became unresponsive. Fortunately, these severe symptoms subsided after a few days and her health appeared to improve. About a month later the pair attempted some very light exercise, but the relapse Kitty suffered left her bedbound for the next eight months."I mainly felt dizzy and exhausted. I would faint a lot and get heart palpitations; I could be just sitting around, and my heart would suddenly leap to 190 beats a minute," says Kitty. She also developed a gluten intolerance and acute abdominal pain that caused her to faint 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 were 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 nauseated and exhausted. During this time her father Scott had to care for Kitty and her mother as they were both struggling with long COVID symptoms. A condition not recognized at the timeUnfortunately, in the early days of the pandemic, due to limited understanding of the effects of COVID-19, medical staff could not provide Kitty and her mother with any answers to their health problems, and the advice they were given – to be more active – only risked making their condition worse.To this day Kitty is still struggling because of the effects of long COVID. "Sometimes I find it hard to speak. My brain feels very blurred and I can't think of a sentence. I stutter a lot. Every day is different. Sometimes I'll be fatigued and dizzy, sometimes I feel brain fog, but I can walk around with it. Sometimes, if I'm doing well, we can go out for walks, but then the next day I could be back in bed. You go through so many phases of up and down, it's like being on a rollercoaster forever." Disrupted education  Kitty's illness forced her to take a long break from school. Online lessons were challenging, and the pressure of trying to complete homework led to further relapses. When in-person education resumed, the effort of trying to cope with the busy school day set her health even further back. Eventually, her family arranged for her to be homeschooled in the lead-up to her exams."I had an examiner come to my house, which made it a lot easier. I could just go back to bed as soon as I'd taken an exam, which really helped." The way forward  Kitty and her mother manage their illness with a combination of medication and careful pacing of their activities, but they are frustrated by the lack of progress in understanding and recognition of the condition. In addition to more scientific research into 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 experiencing fatigue and vision problems.She'd also like to see better understanding of the condition from her peers and teachers."Kids think, 'Oh, I won't get it. I'm younger, I've got a healthier immune system.' But it doesn't work like that. My mum and I were very sporty. We didn't have any underlying health conditions," she says.Her mother Sammie, who went on to found Long COVID Kids, an international charity based in the United Kingdom, voices concern about the lack of recognition for long COVID in young people: "We hear stories from families about children resuming education after COVID-19 with increased allergies or ongoing headaches, nausea or stomach upsets, but their parents are sending them back to school because they don't know it's long COVID. Those children are being asked to continue with their normal activities and are not being given the time to rest. It's not the families' fault. It's a lack of education and awareness that's the issue."In addition to calling on schools to make adjustments for students with long COVID, she is keen to see measures introduced to improve air quality in educational establishments and more mask-wearing to prevent infections."If we don't do that, then we will have an entire generation of children who are likely to be at risk of learning to live with disability. We're now seeing children who are developing long COVID after reinfection, when they didn't develop it after their first, second or third infection. With the numbers of repeat infections, this is deeply concerning. Long COVID Kids has been calling for biomedical research and a focus on prevention." Increasing recognition research and rehabilitation for post COVID-19 conditionThe scale of post COVID-19 condition and the long-term burden it is likely to have on health systems is only starting to become evident. Studies show that approximately 10–20% of individuals who contracted COVID-19 may experience continued symptoms for weeks, months or even years after their original infection, equating to millions of people worldwide.To date, post COVID-19 condition is not well understood in children and young people and more research is needed, particularly in resource-limited countries, to understand its clinical characteristics, frequency and the risk factors that lead some juvenile populations to experience groupings of persistent symptoms.WHO/Europe is in the process of partnering with Long COVID Europe, a network of patient-led associations that has been gathering information on the condition and sharing it with interested stakeholders since its founding last year.WHO/Europe has also been working with patient groups to define priority areas where action is needed. It is now calling upon governments and authorities to focus attention on long COVID and its sufferers through greater:recognition: all services must be adequately equipped, and no patient should be left alone or have to struggle to navigate a system that is not prepared or not able to recognize this very debilitating condition;research and reporting: data gathering and reporting of cases and well-coordinated research with full participation of patients are needed to advance understanding of the prevalence, causes and costs of long COVID; andrehabilitation: this cost–effective intervention is an investment in building back healthy and productive societies. Related Webinar on Post COVID-19 Condition: Children and Young Persons Post COVID-19 condition News A life altered by long COVID – Susan's experience 9 August 2022 Feature stories Coping with the unknown – a family’s story of living with long COVID 19 July 2022