The name Anis Jerbi might not tell you anything, but I invite you to take a look at his Instagram account. Followed by more than 100,000 subscribers, he exhibits his artworks there, mainly portraits of celebrities, whose resemblance is striking.
“The message I want to convey is that you should never underestimate a rare disease, tell yourself there is no treatment and then let it go. There are things to do. We can save lives and get surprising results if we start treatment early, as was the case with aniseed jerbi.”
Mohsen Tanfous is a physician specializing in medicinal biochemistry. His area of expertise: rare diseases, also known as orphan diseases.
He arrived in Quebec in 2006 and has been based in Trois-Rivières since 2014. “I thought it was a beautiful region for medical practice and I was not mistaken. We are really good!”
The 57-year-old man is married with a little girl and speaks several languages. French, Arabic, English, Italian, Spanish, Turkish and “a little German” lists those whose country of origin is a crossroads of civilizations that each left part of their history and culture there.
The adopted Trifluvian has kept his home on the island of Djerba, which he likes to call the island of the Lotophages, in reference to Odyssey’s Odyssey.
Doctor Tanfous was a pediatrician in Tunisia and it was in this capacity that he met Anis at birth on December 22, 2002.
“He was born with the skin on his brain, no skull bones. I was at the beginning of my career and didn’t know what to do…” the doctor admits, adding that the baby was crying, moving, breathing and sucking normally.
“He has good vital signs. There is no need to worry. “I’ll find out what it is,” the doctor assured, handing the child over to his mother, Patricia Dolci, whom I contacted in Tunisia through the magic of the internet.
“Anise’s head was soft, like boiled egg whites. It was impressive for us, but not dangerous for him. After a few days we got used to it,” she said in an interview abroad.
Patricia went to the pediatrician again two weeks after the birth of Anis, who cried a lot. He was obviously in pain, but where and why?
“It was a broken leg,” she learned, and the cause was soon found. Anise suffered from osteogenesis imperfecta, a rare genetic condition.
The woman still remembers what Doctor Tanfous said when he told her that her baby doll had very fragile bones that could break and deform.
“One piece of advice: don’t treat Anise as sick or disabled, he’s 100% normal.”
These words acted like balm for the mother, who from then on progressed “day by day” with anise.
“We have found solutions over time. We didn’t put anise under a glass bell jar.
Allow me to open a little bracket here and revisit a recent column in which I shared the story of Jani Barré, the woman with 157 fractures.
“You’re going to live in hell,” a doctor told her parents when they told them their daughter had osteogenesis imperfecta.
“Hell”… Mohsen Tanfous firmly rejects the use of such a word, reminding that no one can predict the future of someone who is diagnosed with a rare disease.
“The patient knows his life won’t be as easy as someone else’s, but it’s not worth telling him it’s going to be hell. This word is difficult, it can affect his feelings, his expectations and his hopes.
Two doctors. Same diagnosis. Two ways to announce it. With humanity for the one, without a spark of sensitivity for the other. end of bracket.
Coming back to anise, Doctor Tanfous was aware of the existence of a treatment in Italy aimed at slowing down bone loss caused by a collagen anomaly.
“Are you ready to go?” he asked Patricia, who has both Tunisian and Italian citizenship.
Anis went to a hospital in Verona for injections that were then given to him in Tunisia.
Mohsen Tanfous is adamant. The speed with which diagnosis was made and treatment instituted improved the living conditions of Anis, whose skull ossified significantly in the first few months after birth.
Although the boy grew up with disabilities that required some operations, we can count the number of fractures on one hand.
Time has flown by since the pediatrician saw a bright-eyed little boy walk into his office and talk non-stop.
“His health problems did not prevent him from developing a rich vocabulary. He was a real gossip!” he remembers with amusement and, above all, with great admiration for his patient, who has a comprehensive general education.
During our interview, Anis was pleased to learn that Dr. Tanfous wanted to share his story in this column.
“He helped me a lot and I am very grateful to him,” says the young Tunisian, who can count on the doctor to comment on his works of art exhibited on social networks.
Anis Jerbi began drawing seriously around the age of 14 before becoming interested in acrylic and oil painting. Since then he has spent his days making great portraits. Next fall, the young man, who uses a wheelchair, will attend the Academy of Fine Arts in Verona, Italy.
Not only his illness is rare, but also the friendship that developed between Anis and his former pediatrician.
“Given the trust and hope that the family placed in me, it formed a pretty strong bond. Medical practice is a give and take. When a patient has a positive attitude toward their doctor, that’s a reward. We are happy about the recognition and appreciation in the eyes of the patients.”
It is the case.
“Mohsen is a person with a good heart who is passionate about his job,” says Patricia, who is confident about her son’s future.
Twenty years later, Anis Jerbi creates a stimulating, fulfilling and, above all, uninhibited life.