the witness Chronic covid. “Doctors need to be trained”, her son has been affected for two years, Letitia wants to recognize the disease

For Laetitia Doriath and her son, Covid is still very relevant. Robin, 13, has been living with chronic Covid for two years which prevents her from returning to school. In support of the sick, his mother created an association near Bordeaux in the Gironde, to identify and advise the disease.

Covid-19 is ancient history for many people. However, in France, 2.5 million people still live with the chronic form of the disease. This Friday, March 15, is also marked as International Long Covid Day. In Meuse, in the Gironde, a young teenager is one of these patients, who is still difficult to identify.

In January 2022, Robin contracted Covid along with his entire family. “I remember that positive test that made me smile, seeing him alone in his room with his sister, the first evening”Laëtitia remembers Doriath.

This evening would be the little boy’s last almost normal evening. The next day his fever rose to 40 degrees. “Party’s over”Robin’s mother notes. “From then on, everyone moves on with their lives, not Robin.”

Out of school for two years, his son remains exhausted in his bed. “Even today, he can sleep up to 20 hours a day and wake up exhausted”, notes Laëtitia Doriath. The older sister left home for boarding school, away from the medical burden. His mother had to reduce her working hours to care for her son.

At 11 years old, we don’t understand… How can we forget that a fork is called a fork?

Laetitia Doriath,

Robin’s mother, a long-time victim of Covid

Because fatigue is not the only symptom of this disease that affects him. “These include 24-hour headaches, abdominal pain, diarrhea, leg pain, tinnitus, discomfort with light or sound, difficulty breathing, and memory loss.” Systematically lists the mother of the family.

Robin nevertheless enrolled in CNED and is trying to continue his education even though his future is uncertain. “I often tell him that he is only 13 years old, that science can find a cure. Without this hope, we bury it and bury ourselves with it”. Gifted in mathematics, the sociable, little boy fancied himself a professional footballer. “Running for 20 minutes is an upheaval, weeks and weeks of sleep. He also lost his friends, because it was so difficult to talk to them.

Faced with this persistent illness, Robin’s parents embark on an obstacle course. First in the emergency room, then in the hospital, which cannot solve the problem with known treatments. “We went too far in the treatment, which was very heavy for the child. The doctor suspended him due to lack of results.Laëtitia remembers Doriath.

Then come the experts, who refuse to diagnose covid for a long time. “I was told that he was a teenager, and that these symptoms were due to anxiety, as in all teenagers” Laetitia Doriath still regrets it. At that time, chronic covid was only recognized in adults.

Letitia Doriath would wait four months to finally hear the words she had said dozens of times. “Your son isn’t depressed, he’s sick.” It is a doctor in Bordeaux who was already following adults with persistent covid who finally made the diagnosis. “She gave us a fair test. That’s when we realized there are hundreds of people like us.” Robin’s mother is remembered. Examinations will reveal the presence of hypometabolism in the brain stem and inflammation of the temporal lobes.

However, research on this topic is fragmented and treatments do not exist. For months, she would continue to seek information, see specialists, some in Belgium, to help her son, on oxygen, for at least two hours a day. “He has developed an intolerance to histamine, which is due to a constantly overactive immune system, which activates inflammation and causes stomach and digestive pain.” His mother explains.

Robin’s isolation and medical wandering will force Letitia to open an Instagram account to witness her son’s daily life. “I quickly had dozens of messages from people who had been in his situation, and who felt lost., explains Robin’s mother. She then decided to launch an association, Support Covid Long Gironde, in June 2023. Today, about 90 people are members of this association which also gathers some doctors specializing in this field.

Diet, treatment, discussion groups, association pages list advice and tools for these patients. “They don’t have any energy, I do. So if I can help them get out of isolation and move forward in recognizing this disease, I’ll do it.”

At the same time, his organization campaigns for better care in France and in the region. “There are long covid centers, there is none for us. When you call the CHU branch, you are told there is no appointment because the cell does not exist”Laëtitia Doriath regrets.

There is training for doctors, there is a need to train as many practitioners as possible.

Laetitia Doriath

Robin’s mother, long affected by covid

In France, a national association of chronic Covid patients was also created “after D20”, following the work of infectious disease expert Dominique Salmon-Cerron, who specializes in researching the disease. At least 3 million French people are estimated to be living with the disease today.