Unable to walk and housebound at the age of 12 – the extreme consequences of long COVID
World Health Organisation
At 11 years old, Jay from the United Kingdom was just like many boys of his age. He loved playing football with his friends, had a passion for boxing and spent hours trying to get to the next level of the latest computer game. In short, he was a normal boy on the verge of becoming a teenager, fit and healthy and doing well at school. The idea that he might get seriously ill was the very last thing on his, or his parents’, mind.
Extracts
His mother, Neera, a general practitioner (GP), explains how his severe illness following a COVID-19 infection was a shock to them all. “During the worst of the pandemic, we had moved house to accommodate my elderly mother who was struggling being on her own at such a difficult time. We’d deliberately chosen a house that was easy to get around in case she needed to use a walking frame or wheelchair – not realizing, of course, that it would be Jay who would need to be using such things.”
Long COVID diagnosis
Desperate to get some answers and treatments for Jay’s severe symptoms, the family paid to see a private consultant paediatrician in April 2022. Without being able to find a conventional explanation for Jay’s illness, and given that he was suffering symptoms long after his original infection, the consultant made a diagnosis of post COVID-19 condition, commonly known as long COVID.
“It was a relief to finally have it confirmed that Jay’s condition was caused by his original COVID-19 infection, after everything else had been ruled out,” says Neera. “With it, we would hopefully be taken more seriously, and not just dismissed as we had been by some professionals who did not understand or did not believe the severity of Jay’s symptoms. It also gave us more of an idea of what we were dealing with, so we could do some research and try out suggested treatments.”
Jay describes what his life is like after 14 months of being ill. “On a normal day, I wake up, usually after an interrupted sleep, and sit on the bed for a while before finding the energy to get up. Getting dressed takes a lot of effort and my mum and dad have to help me. And I have no appetite. Mum has to make me eat, so I'll eat something small, like toast.”
He continues, “During the day, I might do some schoolwork or physiotherapy, but I can’t manage both on the same day. Any activity I do has to be in 15-minute bursts; otherwise I crash out from exhaustion. Mum helps me with my schoolwork and has to really explain things, because I have problems processing information. I spend a lot of time lying on the sofa now as I just don’t have the energy to move very far around the house.”
“Life is now just about work and being at home to look after Jay and to arrange physio and osteopath appointments. It’s affected all of us. The support we’ve received from the patient group Long COVID Kids has been invaluable, though. It's been a relief to connect with other parents who have children in similar circumstances and to find out more information about the condition.”
Of those infected by SARS-CoV-2, the virus that causes COVID-19, 1 in 10 will go on to develop long COVID, defined as the continuation or development of new symptoms 3 months after the initial infection, with these symptoms lasting for at least 2 months with no other explanation.
In the United Kingdom, an estimated 1.1 million people were living with long COVID in 2022. In the WHO European Region, which covers 53 countries across Europe and central Asia, 35.7 million people are estimated to have experienced long COVID symptoms.