Epilepsy Pioneers in Tunisia and Current Educational Programs in Tunisia

In 1972, Prof. Mohamed Ben Salem created the Tunisian League against Epilepsy. This league was immediately affiliated to the International League against Epilepsy (ILAE). At that time, and because of the small number of epileptologists, the main goal of the league was to increase knowledge about epilepsy, increase public awareness of epilepsy, improve the quality of life, and reduce stigma for people with epilepsy. Dr. Sadok Ouahchi, a psychiatrist, succeeded Prof. Ben Salem in 1990.[1] Since 1995, the league was renamed, by the law of associations, the Tunisian Association against Epilepsy.

In 1995, Prof. Amel Bahri Mrabet was elected the president of the Tunisian Association against Epilepsy (TAAE). She restructured the association and gave it a new strength. Prof. Mrabet graduated from Tunisia Medical School. She spent her residency at the National Institute of Neurology in Tunis directed by Prof. Mongi Ben Hamida. At that time, neurodegenerative diseases were the most common and developing an interest to neurologists for genetic studies and epilepsy was little considered. Since becoming head of the department of neurology at Charles Nicole Hospital in Tunisia, Prof. Hamida has established an Epilepsy Unit and started a surgery program in collaboration with Charles Nicole hospital in Rennes.[2] She organized several epilepsy meetings, particularly the 4th Mediterranean Congress of Epilepsy in 1996 and the first National Epilepsy Congress in 1998, which has become an annual conference. Prof. Mrabet transformed the management of patients with epilepsy by introducing a scientific approach and initiating research projects on epilepsy especially about cognitive disabilities associated with epilepsy. She took part in several epidemiological surveys in Tunisia and her studies on the epidemiology of epilepsy in Tunisia have cited as the unique reference in Tunisia.[3] Her interest in epilepsy made her aware of the great suffering of patients and the extent of stigmatization in Tunisia. Therefore, in 2000, she set up the national day on epilepsy in April which became an annual opportunity to raise awareness among patients and the general public about epilepsy.

In collaboration with national directorate of basic care, Prof. Mrabet has published several booklets about the type of seizures and the work done with people suffering with epilepsy. Her studies about the quality of life of people with epilepsy were the only reference in Tunisia.[4] In 2004, she participated in the writing of the East Mediterranean declaration on epilepsy and the creation of the ILAE Commission of Eastern Mediterranean Affairs (now recalled as ILAE-East Mediterranean Region). Her career was crowned by the title of Ambassador of Epilepsy in the 24th International Epilepsy Congress held in Paris in 2005.

Prof. Chahnez Charfi Triki completed her medical education at Sfax Medical School in Sfax University and her residency was in neurology at the National Institute of Neurology in Tunisia. Her interest on epilepsy started on 1990 during her fellowship on child neurology in Catholic University of Louvain in Brussel (Belgium). She began to look at epilepsy as a disease with multiple diagnostic and therapeutic possibilities and became aware of the strong stigmatization of patients with epilepsy in Tunisia. In 1995, she joined the TAAE and took part in all scientific and social activities. She was elected as a president in 2004. Prof. Triki has a great interest in teaching and in education and was involved in the activities of the European Academy of Epilepsy from 2002 to 2009 and was considered as an epilepsy trainer. She organized and participated in the organization of training sessions for trainers in epilepsy held in France, Tunisia, Morocco, Senegal and Cameroon.

During her activities in TAAE, Prof. Triki became aware of the low level of knowledge of this disease by medical doctors (general practitioners and specialists) and the health care professionals. Hence in 2000, she established a Master's degree in epilepsy in Sfax medical school which is still operative to date as a professional Master's degree course. This 2-year Master's degree was initially organized as a face to face meeting in every 2 weeks. Travelling to attend the class every 2 weeks was very restrictive for doctors who lived outside the city, in the south or north of Tunisia and since 2005, the Master's degree became an “e-learning” training (http://www.uemv.net/campus-pu/). Each class had 20 to 30 medical doctors with different specialties (neurology, neuropediatrics, pediatrics, neurosurgery, neurophysiology, and also general practicing in rural areas). Since switching to “e-learning,” they have had students from other countries (Senegal, Jordan, France, Morocco, and Algeria) and the number of applicants is increasing every year with a waiting list. The program, divided into five modules, fulfilled the educational objectives of ILAE. It includes theoretical courses, recorded lectures, clinical case discussion workshops, and a practical internship in an accredited department. Since its creation, this Master's degree has been largely involved in improving doctor's knowledge of epilepsy, diagnosis, and classification of epilepsy, use and interpretation of electroencephalography (EEG), psychosocial aspect, and treatment of epilepsy.

To improve the management of epilepsy and the quality of life of people with epilepsy in the Eastern Mediterranean Region (EMR), Prof. Triki joined the ILAE as the general secretary (2007–2009), a member (2009–2013), and then as the Chair of ILAE–EMR (2017–2021). She also joined the International Bureau of Epilepsy (IBE) as the general secretary (2009–2013), then as the Chair (2013–2017) of the Regional Executive Committee for the Eastern Mediterranean Region. Prof. Triki was the cochair of scientific and organization committee of the fourth East Mediterranean Epilepsy Congress (EMEC) held in Luxor (Egypt) in 2017 and for the next fifth EMEC, which will be held in March 2019 at Marrakech (Morocco). In 2016, she participated in the foundation of a social association for children with epilepsy called Ahmed Association to improve the awareness of people with epilepsy. At the department of child neurology at the Hedi Chaker University Hospital, where she has been the head since 2008, she established a children's epilepsy unit with a video and Holter EEG unit. She also started genetic studies in epilepsy, specifically about febrile seizures[4] [5] [6] and developmental encephalopathies and epileptic encephalopathies in Tunisia[7] [8] to provide diagnosis and genetic counseling to patients.[9]

In recent years, we have seen growing interest in child epilepsy among young pediatric neurologists and pediatricians. Among them, some have achieved fellowships in internationally renowned epilepsy centers and are putting in place for updated diagnostic practices and techniques to improve the care of these children; they are also actively involved in teaching and the training of doctors and health professionals. Nevertheless, a great deal of work remains to be done in Tunisia concerning the diagnosis, explorations, treatment, and social care of children with epilepsy. Moreover, the setting up of a network between all stakeholders and a national action plan of epilepsy are necessary.

• References

• 1 Triki CC, Miladi NBK. L'association tunisienne de lutte contre l'épilepsie: parcours historique, objectifs et moyens. Epilepsies 2006; 18 (01) 51-53
• 2 Mrabet Khiari H, Khemiri E, Parain D, Hattab N, Proust F, Mrabet A. Epilepsy surgery program in Tunisia: an example of a Tunisian French collaboration. Seizure 2010; 19 (02) 74-78
• 3 Mrabet H, Mrabet A, Zouari B, Ghachem R. Health-related quality of life of people with epilepsy compared with a general reference population: a Tunisian study. Epilepsia 2004; 45 (07) 838-843
• 4 Attia-Romdhane N, Mrabet A, Ben Hamida M. Prevalence of epilepsy in Kelibia, Tunisia. Epilepsia 1993; 34 (06) 1028-1032
• 5 Fendri-Kriaa N, Boujilbene S, Kammoun F. , et al. A putative disease-associated haplotype within the SCN1A gene in Dravet syndrome. Biochem Biophys Res Commun 2011; 408 (04) 654-657
• 6 Fendri-Kriaa N, Kammoun F, Salem IH. , et al. New mutation c.374C>T and a putative disease-associated haplotype within SCN1B gene in Tunisian families with febrile seizures. Eur J Neurol 2011; 18 (05) 695-702
• 7 Fendri-Kriaa N, Louhichi N, Mkaouar-Rebai E. , et al. The first genome-wide scan in a tunisian family with generalized epilepsy with febrile seizure plus (GEFS+). J Child Neurol 2010; 25 (11) 1362-1368
• 8 Jdila MB, Issa AB, Khabou B. , et al. Novel mutations in the CDKL5 gene in complex genotypes associated with West syndrome with variable phenotype: First description of somatic mosaic state. Clin Chim Acta 2017; 473: 51-59
• 9 Jdila MB, Triki C, Rhouma BB. , et al. A novel C-terminal truncated mutation in hCDKL5 protein causing a severe West syndrome: Comparison with previous truncated mutations and genotype/phenotype correlation. Int J Dev Neurosci 2019; 72: 22-30