Physical Address
Indirizzo: Via Mario Greco 60, Buttigliera Alta, 10090, Torino, Italy
Improving the care of patients with spina bifida through a holistic and multidisciplinary approach was highlighted this Saturday during the first national symposium dedicated to this complex pathology.
Organized by the Algerian Association of Spina Bifida Patients (AAMSB) at the Moufdi-Zakaria Palace of Culture, this initiative worked mainly to bring together the energies of all the stakeholders involved in order to actively contribute to the implementation of concrete measures, with the aim of improving the care of patients suffering from this disease.
The organizers were keen to explain that spina bifida, a birth defect affecting the spine and spinal cord, occurs when part of the neural tube does not close completely during fetal development. This anomaly can lead to a series of neurological, orthopedic, urological and digestive complications, varying in severity from one individual to another.
In Algeria, as in many countries, spina bifida remains a major public health challenge. It is estimated that thousands of Algerians live with this pathology, often facing a lack of information, limited access to adequate care and difficulties with social integration. Conferences, debates, round tables and exchanges of experiences punctuated this day dedicated to raising awareness and reflection on the management of this disease.
On this occasion, medical experts presented the latest advances in the diagnosis, treatment and management of spina bifida. In addition, testimonies from patients and their families were collected to better understand the challenges and obstacles they face on a daily basis. According to the organizers, this valuable information will make it possible to develop support and care strategies more adapted to the Algerian reality.
Among the major issues debated, access to early diagnosis and quality care was strongly highlighted. Thus, early diagnosis of spina bifida is essential to enable optimal treatment and limit complications. However, many patients struggle to access rapid diagnosis and adequate care. According to the association, this is explained by a lack of awareness of the disease, a shortage of qualified specialists and an insufficiency of dedicated medical infrastructure.
In addition, participants also highlighted the need for multidisciplinary and coordinated care. According to the speakers, the complexity of spina bifida requires a multidisciplinary medical approach involving various specialists such as neurosurgeons, orthopedists, urologists, gastroenterologists, functional rehabilitation specialists, psychologists and social workers. However, according to numerous testimonies, the coordination of care often proves to be faulty, weakening patient monitoring and limiting the effectiveness of treatments.
Likewise, during this symposium, emphasis was placed on the importance of psychological and social support for patients and their families. It has been emphasized that spina bifida is not treatable. Neurological disorders are therefore definitive. Many patients are dependent on medical care for life. The goal of therapy is to maintain the patient’s autonomy and mobility as much as possible, as well as to avoid complications. Therapy varies depending on the severity of the malformation.
Numerous studies have demonstrated that spina bifida has a significant impact on the psychological and social well-being of patients and their families. Appropriate support is therefore essential to enable them to cope and ensure the well‐being and quality of life of those affected.
It should be noted that health experts advocate the consumption of folic acid and B9 supplement in order to prevent any risk of this disease. This B group vitamin is essential for the development of the nervous system and the spinal cord. Taken as supplements of 0.4 milligrams (mg) to 1 mg three months before conception and during the first three months of pregnancy, it reduces the risk of spina bifida in the fetus to 70%. This vitamin is available in food and more specifically in fruits, vegetables, cereals, meat and in most green vegetables. However, it is very difficult to naturally absorb a sufficient quantity to prevent spina bifida, hence the interest in taking it in the form of a food supplement, ideally prescribed by the doctor.