Doctors baffled by teenager's horrific long Covid symptoms

Mia, 16, from Norwich, has been diagnosed with long Covid.

Mia, 16, from Norwich, has been diagnosed with long Covid. - Credit: Jo Wilkin

A teenager has been left deaf, blind and covered in lesions but doctors are baffled as to exactly what is wrong with her.

The only diagnosis medical experts can give is that 16-year-old Mia, from Norwich, has long Covid.

And they are stumped as to why only the right side of her body has been affected. 

Mum Jo Wilkin says her daughter’s life has been “turned upside down” and she is struggling with constant pain and chronic fatigue. 

Mia is believed to have first caught Covid back in May 2020 and then again in September. She was left bed-ridden both times.

But it wasn’t until March 2021 that the once happy and bubbly teen was hit by a mystery illness.  

Mia,16, has been diagnosed with long Covid

Mia,16, has been diagnosed with long Covid which doctors believe has caused lesions to appear all over the right side of her body and face. - Credit: Jo Wilkin

Ms Wilkin said Mia suddenly started experiencing “excruciating” stomach pains and a small sore appeared on her lip. 

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But things soon escalated. 

Mia has is now deaf in her right ear, blind in her right eye, has lesions up the entire right side of her body and face, has Postural Tachycardia Syndrome (PoTS) - causing breathlessness and chest pains - a constant fever, bowel problems, food intolerances, fatigue and tiredness.

She is in so much pain she can only walk with crutches. 

But despite endless GP and hospital appointments, no one has been able to give them any clear answers. 

Mia,16, has been diagnosed with long Covid

Mia,16, has been diagnosed with long Covid which doctors believe has caused lesions to appear all over the right side of her body and face. - Credit: Jo Wilkin

“It took a long time but eventually we got referred to dermatology at the Norfolk and Norwich University hospital and they looked at her lesions,” said Ms Wilkin. 

“The dermatologist said they had seen a couple of people with sores like Mia’s but not as extreme. They had never seen anything like it. 

“She has had blood tests, biopsies and scans but they all come back as normal. 

Mia, 16, from Norwich, has been diagnosed with long Covid.

Mia, 16, from Norwich, has been diagnosed with long Covid. - Credit: Jo Wilkin

"I called my sister who is a nurse and I said ‘what is going on?’ She had actually contracted Covid and had been diagnosed with long Covid.  

“She did lots of research and found a young girl from America in a long Covid support group who had been suffering with similar symptoms. We took it to our GP and I said ‘is this something we should be considering?’" 

That was then Mia was referred to a long Covid clinic at Addenbrookes Hospital in Cambridge - where she received an official diagnosis. 

But with little research into long Covid or possible treatments, Ms Wilkin, 46, says she does not know when Mia will get better and fears how long her life will be on hold.

Mia, 16, from Norwich, has been diagnosed with long Covid.

Mia, 16, from Norwich, has been diagnosed with long Covid. - Credit: Jo Wilkin

But brave Mia is continuing her school work from home and is “determined” to achieve her GCSEs with the hope that she will be able to attend sixth form college once she is better. 

Her dream is to go to university where she wants to study drama and musical theatre or maths. 

“It’s absolutely heart breaking,” she said. 

“It’s had a huge impact on her life. Mia was always dancing around and singing. Musical theatre and drama are her passions but all of that has had to stop. 

“She hasn’t been to school since September because she physically can’t and because of the Covid rates, we need to make sure she is safe. We don’t know what it would do if she caught it again. 

Mia, 16, with her mum Jo Wilkin. Mia has been diagnosed with long Covid.

Mia, 16, with her mum Jo Wilkin. Mia has been diagnosed with long Covid. - Credit: Jo Wilkin

“The scariest part is the unknown. We don’t know if she will get her sight or hearing back. But the doctors have been brilliant and they are desperate to work out what's going on. 

“It can be overwhelming. So, we try and look at one ailment at a time. It’s the only way we can both cope.   

“I just don’t want her in pain anymore. But right now, there doesn’t seem to be an end to this.” 

Mia, 16, from Norwich, has been diagnosed with long Covid.

Mia, 16, from Norwich, has been diagnosed with long Covid. - Credit: Jo Wilkin

A spokesman for Norfolk and Waveney NHS said: “We wish Mia all the best with her ongoing treatment. While the scientific and medical community has learnt so much about Covid over the last two years, treating children and young people with long Covid is a new and emerging speciality and we are continually learning.

"Long Covid can happen to anyone who has had coronavirus, even if the illness was mild, or they had no symptoms, but the evidence is clear that getting vaccinated is the best way to protect yourself, your family and your friends, whether it be a first, second or booster dose.”