Illness can sometimes bring down the whole family. If for many people the Covid epidemic is now a part of the past, some are far from being out of the woods and continue to fight the disease every day. This is the case in the haute-lawyer of the two daughters of Isabel Libel, who went through a real ordeal to recognize her children’s illness: chronic covid.
After the peak years of the coronavirus pandemic, about 2 million people – or about 4% of the national population – presented prolonged or frequent symptoms that affected their daily functioning, according to figures from Public Health France. Between the absence of established criteria and the lack of recognition of the new disease, diagnosing Covid has long been a very difficult task for health professionals, as the pathology is often unknown and complex to treat. Not to mention that it’s even harder for children, some simply feeling “abandoned,” according to many grieving families. The youngest age is well recorded in the files of high officials, but there are no official statistics and little concrete support. Censuses by Inserm (National Institute of Health and Medical Research) and Public Health France are reserved for adults.
“The Great Medical Void”
Studies and scientific reviews related to long-term covid in children have increased in recent months. Sometimes the whole family life is affected, in some cases with serious complications. In France, around 100,000 minors will suffer from it, estimates Isabelle Leible, a resident of Haute-Loire, who just co-founded the Covid Long Infants Association. About four years ago, her two daughters, Letitia and Johanna, then 17 and 14, contracted Covid, a severe form. Since then, “they no longer go to school and practically no longer have a social life.” For more than two years, the youngest “slept about 20 hours a day because her body was so weakened by the disease”. Kishore “feels unwell” and has a second stay at the hospital for heart problems…
“Our whole family life was turned upside down…”
“He got the virus in 2020. At that time, like many sick people, he had cough, fever, migraines. One of my daughters had diarrhea for three years. Can you imagine that this could be due to fatigue? At one point, she would get out of bed just to eat. We tried to put her back in school, but she couldn’t hold on anymore. We were initially told that it was psychological and that our daughters were stressed, that they would have to move around a bit… We did what we were told to do. Now, one of them is also in a wheelchair,” says the mother with great disappointment. Because for this special education professional, the psychological failure thesis doesn’t quite stick.
According to Public Health France, women have been affected by Covid for a long time.
So, for about 18 months, the mother had to go through a series of medical appointments and very quickly found herself facing a cosmic void… “I had the horrible impression that for many doctors, they didn’t know, so they didn’t know. exists. As if it doesn’t fit into a box. And it is very violent for parents. We feel abandoned by our children and families are in complete disarray due to this lack of recognition. I wonder how many children are undiagnosed,” Isabelle asks.
And to add:
In Haute-Loire, there is nothing for this type of disease. The worst thing is that we have completely denied this disease. It was a disaster. We consulted many doctors, the chronic form of covid in children did not exist. Overall, identity is complex and even more so among young people. We can no longer turn a blind eye to this.
After more than a year of battle, the diagnosis finally came. In spring 2022, long covid services in Montpellier and Marseille are evident and confirm what the mother had feared: her two daughters are suffering from the consequences of covid-19. Today, migraines persist, not to mention PoTS syndrome (postural tachycardia), discomfort with loss of consciousness, or suspicion of autonomic epilepsy. Polyneuropathy was also diagnosed. To put it simply, it is all the organs that undergo disturbances (digestive, cardiac, neurological and many others…).
“The team at Emmanuel-Chabrier High School in Yssingeaux gave us a lot of support. It is important to clarify that the systemic attack by Covid on all organs. You may have had the virus once, twice or three times without worrying and on the fourth hit become ill with long-term Covid. Can. Every day, right now, life is changing,” warns the mother with intense emotion.
A battery of exams in Italy… and treatment?
Last November, a report by COVARS (Government Scientific Council) decried, among other things, the trend towards psychopathology of chronic Covid and the problem of its non-recognition. “Our children need us 24 hours a day now. What should I tell my daughter? “Maybe in 10 years you’ll be cured!” On the French side, we are told that we have to wait, that there is no treatment,” Isabelle lamented.
When they faced a worsening of their symptoms due to re-infection during their stay in Italy, the afflicted mother was able to take her daughters to see a Rome-based researcher working on pediatric long-term covid. A battery of tests on two adolescents resulted in treatment that appeared to improve their quality of life. “But I don’t have a doctor in France who can prescribe it to me. I manage to get it thanks to the European Union but we won’t be able to send 10,000 French children to Rome,” underlines Isabelle Leible.
Within this new association called Covid Long Infants, whose head office is located in Les Vastres in Haute-Loire, children from all over France – and many younger than the co-founder’s daughters – are also supported. “There is also a little one, only 2 years old, who is starting to talk. His mother is a doctor. Covid is still far away,” adds Isabel Lebel.
Christophe Coffey
Mission of the new Kovid Long Children’s Association
A new organization dedicated to children with chronic covid has just been created. The head office is located in the Haute-Loire in Les Vastres. Here are the main missions of the constitution.
The primary objective is to work toward better recognition and management of this little-known pathology. It works closely with the Covid Long Pediatric collective and associations #ApresJ20 Covid Long France as well as Millions Missing France, which invest in the same mission.
Warning from public authorities. The Covid-19 Children’s Association is committed to raising awareness of the disease among minors and young adults for better recognition and care.
Research base. The structure is also committed to supporting research in pediatric long-term covid and participating in it as expert patients.
Administrative support. Kovid Long Kids helps sick children as well as teenagers and their families in dealing with various organizations.
school. One of the association’s many missions includes raising awareness in national education institutions for appropriate and uniform reception conditions throughout France.
Follow up. Members also wish to inform pediatricians and general practitioners for relevant follow-up while respecting the results of international research.
Scientific Committee. “We have a scientific committee with the best experts in pediatric chronic covid: Doctor Danilo Buensenso, pediatrician specialist in infectious diseases (Gemelli Hospital, Rome), Professor Eric Guage, nuclear doctor, University of Aix Marseille”, detailed information of the members
When can we talk about long covid?
According to the Regional Health Agency (ARS), we talk about “long covid” when, after infection, a person still suffers from initial or secondary symptoms for more than 3 months, these symptoms are not connected with other pathology.
in children
According to the Long Covid Children’s Association, you can develop the disease after symptoms of the disease or asymptomatic infection (without visible symptoms). “Today it is estimated that 10 to 20% of children infected with Covid-19 present or present with persistent symptoms of varying degrees of severity and 1% have severe and disabling after-effects. »
Diagnostic
?Contact your doctor or the Covid Long Unit in your department (04.71.04.73.20). In case of difficulties, the Covid Long Enfants Association can be contacted via email: covidlongenfants@ass ociation-cle.com.
