9 September 2021 marked the start of the nightmare for Erika Scheid Bjørnstad from Oslo. She was too young to get the vaccine. Like many others, she was infected by the coronavirus. But for Erika, what was supposed to be like the flu turned into something far more serious. Losing my sight – When I get up, or sit up, my pulse skyrockets. I lose my sight and hearing for several minutes. I get nauseous, and tremble, and the muscles in my legs fail, says the 16-year-old. Erika Scheid Bjørnstad is forced to spend large parts of the day in bed. Photo: Jan-Erik Wilthil / news Sometimes the heart beats as many as 200 times a minute. The only thing that helps is lying down. Then the pulse drops to a normal level. After several doctor’s visits and referrals to specialists, she was finally diagnosed with Postural Tachycardia Syndrome, abbreviated as POTS. Knowledge of the disorder is limited, and it is known from the past that doctors struggle to make the diagnosis. No cure The doctors believe the disorder is due to the late effects of covid-19. She receives help from both a heart specialist and a neurologist, but so far without much effect. Erika is on a number of medications to reduce the long covid symptoms. They only have a limited effect. Photo: Jan-Erik Wilthil / news – There will be a lot of trial and error. There is no cure, but I am given medication that alleviates the symptoms. They don’t work very well, she says. The health problems have changed life completely for the previously active 16-year-old. – I have started high school, but I can’t manage more than a couple of hours at school. I hardly get to be with my friends. I try my best to be at school, but then I feel really bad afterwards. She has previously been an active alpinist. Now the health problems have made it impossible. – Several young people are affected – It is terribly sad. I feel that she is forgotten, and that she does not get the treatment she needs, says Erika’s mother, Brita Scheid Bjørnstad. Brita Scheid Bjørnstad is Erika’s mother, and chairperson of the newly started Norwegian Covid Association. Photo: Jan-Erik Wilthil / news In addition to being a mother to a sick daughter, she is chairman of the Norwegian Covid Association. Bjørnstad believes that several young people are struggling with the same symptoms as their daughter, after they have become ill from corona. – I have spoken to quite a few parents who say that their child has got POTS. Most people feel that they are completely alone, and it is completely individual whether they get the help they need. Many have not even been diagnosed with “long covid”, says Bjørnstad. She believes the late effects of corona infection have become a public health problem. – It is incredible that this is not addressed, and that people do not realize that there are any consequences of this pandemic, says Bjørnstad. Lack of overview No one has a complete overview of how many people are affected by “long covid”. A recent review of all available literature shows that 10 per cent of those vaccinated who become infected have late effects. If it is correct, as many as 400,000 Norwegians may struggle with long-term effects to varying degrees. NAV recently presented figures showing a dramatic increase in sickness absence last year. 1.3 million working days were lost as a result of laxity/fatigue, which NAV believes has a clear connection with the after-effects of covid-19. Bjørnstad is now asking that GPs adopt a separate diagnosis code, so that those affected will appear in the statistics. – It is important for those who have “long covid” to be believed and taken seriously. Without a diagnosis, we will also not know how many are affected. I myself had to pray for my daughter to receive the diagnosis. The medical specialist did not know the code existed, says Bjørnstad. The most common symptoms of “long covid” cough shortness of breath fatigue headache palpitations chest pain joint pain reduced physical capacity depression insomnia concentration difficulties (“brain fog”) Source: NHI Nakstad admits problems The Directorate of Health is responsible for preparing diagnosis codes. The World Health Organization has already created a diagnosis code for late effects of covid-19. This is used by the specialist health service here in Norway, but not by GPs. Assistant director of health Espen Rostrup Nakstad. Photo: ISMAIL BURAK AKKAN / news Assistant director of health Espen Rostrup Nakstad admits problems with the system. – Unfortunately, the coding system has not been well enough known in all parts of the health service, and we know that there has been variation in the use of codes. This is due, among other things, to the fact that it is difficult to distinguish symptoms of other disease states from covid-19, says Nakstad. According to Nakstad, there is a need for more knowledge about “long covid” throughout the health service. He also says that the Directorate of Health continuously works to update and disseminate knowledge about late effects. – Correct coding is important for us to have a more reliable data base for research, quality development and prioritization of patients with long-term effects after covid-19, says Nakstad. Considering treatment abroad Back on Nordstrand in Oslo, Erika Scheid Bjørnstad has to retreat to the bedroom. Any strain makes her feel physically ill. – Tired is not really an adequate word. It is difficult to describe it. I kind of get flu, she says. In addition to the unstable pulse, she struggles with chronic migraines. Long covid has put life on hold for 16-year-old Erika Scheid Bjørnstad. Photo: Jan-Erik Wilthil / news If the treatment in Norway still does not bring much improvement, the family considers looking abroad for help. – I had a POTS attack on the plane on the way to Tenerife. In Spain, the doctors knew straight away what to do, but at the emergency room in Oslo there was not much help to be had, she says. According to the mother, there are more people with “long covid” who choose treatment outside Norway. – I know several patients who travel abroad because they feel that the treatment offered here at home is too poor, says Bjørnstad. Hi! Do you have any input or tips after reading this case? Please send me an email.
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The heart runs wild – news Oslo and Viken – Local news, TV and radio
