A SCHOOL girl feared she “might die” at her lowest point of her 10-month battle with long Covid.
Liliana Jackson, 16, from Sleaford, Lincolnshire, feels like doctors have ignored her - as statistics show GPs are failing to diagnose cases.
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Liliana was healthy and active before being diagnosed with Covid in September 2020.
Since then she has never recovered from the disease, suffering chest and nerve pain and a rash that felt like someone was “stabbing” her.
She was rushed to hospital on Christmas Day at her worst point, struggling with severe chest pain.
But she claims a doctor told her long Covid “didn’t exist in kids” before sending her home.
The family have struggled to get clear answers, as scientists admit there is a lack of information on the condition in children and young adults.
Long Covid is thought to be currently affecting around one million people, according to June figures from the Office for National Statistics (ONS).
Some 33,000 are thought to be in those aged two to 16 years old.
Around 385,000 people have had their symptoms for over a year, including 9,000 people under 16 years old.
NHS clinics have been set up to help adults with more on the way for kids specifically.
But experts fear GPs are not diagnosing cases.
Experts from Oxford University and the London School of Hygiene and Tropical Medicine said this week only one per cent of cases are on record.
They found only 23,273 cases were formally recorded between February 2020 and April 2021 at GP practises in England, compared with estimates of two million cases over this time period.
‘I thought I might die’
Liliana’s energetic and sporty lifestyle was ripped away from her the day she was diagnosed with Covid last year.
She she wasn't surprised to have caught it and thought it would only last a week or two, adding: “I didn't think it would ever be as bad as it was or last as long as it has.”
Around a week after becoming ill she ended up in hospital after developing a rash all over her body.
Liliana said: “It hurt to touch my skin, it felt like someone was stabbing me.
“They ran a bunch of tests and they basically said there was nothing they could do because it was just Covid and I would recover and then they sent me home.”
The teen was discharged the next day but for months battled with fatigue and breathlessness.
A bad flare-up over the festive period left Liliana back in hospital on Christmas Day.
She said: “I had a really bad experience where my chest was cramping up and I got nerve pain... I had to go to hospital and then I did think then I might die.”
Liliana and her mum, Gail, didn't feel they were taken seriously.
Liliana said: “The doctor asked me if I had been on a ventilator and I said no. Then he told me long Covid didn't exist in kids.”
Gail said: “That was probably the lowest point in the whole thing, because we just felt nobody was listening.
“We couldn't get the help, nobody understood what was wrong. But there was no way that she wasn't suffering, she was in such terrible agony.
“I questioned myself, I thought are we making something out of this and it isn't as bad as we think?”
Desperate for answers, Gail ended up finding a support group online for the family as thousands of others have done.
Eventually Liliana was referred to a long Covid clinic, one of around 60 across the country.
But the symptoms haven't gone away and studying for her exams has been difficult.
Liliana said: “Since Covid I suffer really badly with brain fog and getting my words out in the right order and writing things down in the right order.
“So I actually get extra time now during my exams.”
Liliana has recently had both Covid vaccine doses in the hopes they will relieve her condition.
Research has suggested half of long Covid patients feel better after a coronavirus jab.
The teen said: “My message to young people who don't take it seriously would be to research, to educate themselves, that actually they can be at risk.
“Young people their age are suffering really badly from catching Covid.”
The Department of Health said: “We are working with scientists to improve the understanding of long COvid and have opened new specialist clinics.”
Can children and teens get long Covid?
The short answer is yes, but scientists are not sure how badly affected they are.
Covid itself rarely causes significant disease in children and young people.
And ONS stats suggest near to one in ten of those who have tested positive have gone on to have persistent symptoms.
But an expert has warned of confusing long Covid symptoms with general ailments suffered by teenagers.
Speaking at a Royal Society for Medicine virtual briefing today, Professor Russell Viner, from University College London, said: “We need to be careful however about the claims that one in ten children, or claims such as these, which come from uncontrolled studies.
“We need to remember that some of the symptoms, such as very significant fatigue, are very common in teenagers.
“Some work I did quite some years ago - about 45 per cent of teenagers will tell you they are extremely tired four or more days a week. That was well before Covid.
“That is the burden of growth, and going to school and being a teenager.
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“Similarly with memory issues and others - they are relatively common in the population.”
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Prof Viner, a member of Sage and past president of the Royal College of Paediatric and Child Health, added: “The answer is we just don't know. But I think we need to be careful and not jump to assumptions.”
The NHS is set to invest £100 million in specialist services for long Covid, including for new children’s hubs.