Sadly many millions died as a result of Covid-19, but many more survived. However, an alarming number of people have been left with lasting side effects which has been classified as a condition of its own, namely Long Covid.
Symptoms include chronic exhaustion, pain in various parts of the body, weakness, breathing difficulties, headaches, a persistent cough, dizziness and even heart issues. And there is currently no cure.
Watching a family member go through something like this can be difficult, but when it comes to children, the situation is even harder.
This is the case for thousands of families all over the country as children who have been through Covid-19 and apparently recovered, are left incapacitated by a series of debilitating symptoms.
Colin Pidgeon has had to watch his daughter Rosie struggle with the effects of Long Covid as having recovered from the virus in August 2021, she got ready to go back to school after 10 days in isolation. However, the effort of getting herself together was too much and she fainted. Her parents, Colin and Cathy, thought that a few more days would see her right, but a week or so later, she developed a migraine, which she has suffered with, almost constantly, for over 18 months.
“Rosie’s migraine never really goes, but rather if she gets over-tired, or a place is too bright or loud it gets worse until she becomes so unwell she feels like she has to vomit,” says Colin, who works as an economist.
“She also suffers from other fluctuating symptoms, which are consequential to the acute infection and we strongly suspect that the virus persists in her body tissues, blood, muscles, brain and probably ovaries. And so her symptoms, which include muscle and joint pain, shortness of breath, cognitive dysfunction, hair loss, appalling insomnia, overwhelming exhaustion which is not fixed by sleep, and tachycardia (racing heartrate and dizziness, continue to flare up and there is no real improvement, despite being 20 months (post Covid).
Colin Pidgeon with his daughter Rosie Pidgeon
“We saw the GP several times as we were particularly concerned by the fainting and headache and also went privately and spent thousands of pounds to get MRIs heart scans and consultations to check these things out. In the meantime, the GP referred Rosie to the post-Covid service and while initially we were relieved to get a diagnosis because we thought it would unlock support and treatment, all it really unlocked were a couple of Zoom assessments and then she was discharged without treatment.
“Long Covid is a collection of symptoms which affect different people to differing degrees. It is confusing and incredibly difficult to understand when viewed from the outside.
“Occasionally new symptoms appear from nowhere, while others lessen a bit. It makes me sad and frustrated - and despite what we were told, we know the risks are significant for children. So I feel very concerned at the number of other families who, having blown all their savings on private healthcare, will be left trying to care for chronically ill youngsters, with little support, no treatment and no cure.”
Colin who lives in Dundonald, Co Down with his wife Cathy and five children, says that life has changed dramatically for his 18-year-old daughter since she developed the condition.
“Rosie struggles to read and write now because of her cognitive dysfunction,” he says.
“She had to give up school and has gone to Further Education college to do art and design. She is a brilliant artist, so is fortunate that Long Covid has not robbed her of that. In order to conserve her energy, she uses a motorised wheelchair to get to college, and on good days it goes OK. On bad days, she cannot get out of bed because she is both exhausted and in pain, the light hurts her eyes and sound hurts her brain.
Colin and Rosie
“Before Covid, she was a fabulous Irish dancer, but has had to accept that she will probably never dance again. Hiking is beyond her and even reading a book is mostly beyond her. But she can still paint and make beautiful things that people enjoy looking at.
“She has been so tough, so resilient and has channelled her pain and frustration through wonderful, thought-provoking and challenging artworks which have spoken to fellow sufferers around the world and have been used by doctors.
“Rosie has been an inspiration to me and hundreds, maybe thousands of others. She has not given up and is fighting for young people to be heard. She has courage and strength beyond her years and she amazes me every day. But my goodness, I wish she did not have to.”
The 48-year-old says that there isn’t enough being done to help people with Long Covid and while his daughter is lucky to have good medical care, no-one knows what the future will bring.
“Biophysiological research which focuses on treatment, not endless surveys of symptoms and studies into promising drugs and other therapeutics (are important),” he says. “But most importantly we urgently need to turn off the tap of new infections because each carries a significant risk that the person infected will not recover and will be sick like Rosie for years, perhaps forever. That means, (adopting) a sensible masking policy, without hysterics. It means investing in clean indoor air — which we have the tech and ability to do. It makes sense too, to stop people becoming disabled. It is brutal to watch a young woman who in 2019 performed to 1000 people in Disneyland with her dance school, now lying on the bed with a compression icepack on her head because she can't stand the sound of talking. Or her skin so sore that she can’t bear the feel of her pyjamas.
“Rosie is very fortunate to have a brilliant, caring and kind consultant. But he can only use the tools that are available, and there is no recognised and agreed treatment protocol for Long Covid. But at least he does not gaslight her or pretend her condition is not real or all in her head. Before long, she will have been ill for two years, more than 10% of her life. We do not know if she will ever get better. We don't really know what recovery could look like. She is much better than she was a year ago, but progress has stalled a bit. Maybe this is as good as it gets.
“There are thousands of children and young people across the island of Ireland, who have no access to adequate healthcare, little support in school and whose families are really struggling. Unless action is taken to stop infection, this is going to get worse. We risk a whole generation not getting qualifications, having few skills and possibly never working. That is not a good reflection on adults. In Africa, they say it takes a village to raise a child - but in this country, it seems that raising a child is done alone while the village wanders off and tries to pretend the child exists. And that is an utterly shameful state of affairs and in the long run, I think we will all pay a very heavy price for it.”
While the family are hoping and praying for a cure for their daughter, Colin’s advice to anyone else who has just been diagnosed with the condition is to rest as much as possible, conserve energy and don’t give up hope.
“Overdoing it can cause huge and horrible crashes, so look for support,” he says. “The charity Long Covid Kids has great resources and support for young people and their parents. Other groups, on Facebook and elsewhere are terrific.
“But don't let anyone tell you that what you are experiencing is not real or that it is in your head. It is real and you deserve to be believed, and to be treated, and you do not need to be pushed into exercise (which will most likely make you more ill) or psychiatry, unless you need support for the mental health problems that go hand in hand with chronic illness. So make sure to rest and believe that you will get better.”
For more information, see www.longcovidkids.org or www.nhs.uk.
