An awareness meeting initiated under the theme "well-being and care for patients with Marfan syndrome" was organized on Saturday in Rabat, with a view to raising awareness about the suffering of patients affected by this disease.
This meeting, organized by the SOS Marfan association, in partnership with the Agdal-Riyad District Council and the Royal Moroccan Federation of Sport for All, on the occasion of the 2nd National Marfan Syndrome Day, was an opportunity to highlight this rare disease from different angles, as well as the daily constraints faced by people affected by this rare hereditary connective tissue disease which causes ocular, skeletal, cardiac, vascular, pulmonary, and central nervous system abnormalities.
On this occasion, the president of the SOS Marfan association, Fatima Bousdig, emphasized that this disease has affected her body since birth, causing her to lose some of her bodily functions, highlighting the daily sequences of the battle that the patient wages under the effects of this syndrome, reports MAP.
She noted, in a statement to MAP, that the objective behind this meeting is to make this disease, still little known to a large part of the population, better known, expressing her hope to "set up a multidisciplinary center for patient care, providing them with comprehensive care without having to travel to consult doctors of different specialties".
For his part, cardiovascular surgery specialist RĂ©da Belhaj noted that this syndrome affects the heart, valves, bones, and eyes, emphasizing the importance of diagnosis and early detection of the symptoms of this disease, particularly those affecting the valve and the heart.
To this end, he presented a scientific presentation on the medical aspect of the syndrome, through the definition of its symptoms and the identification of medical intervention methods for treatment, noting that all resources are available to treat this disease and minimize the effects of its complications.
Psychologist Amina Askour, for her part, highlighted the importance of psychological treatment for people affected by this rare disease, by guaranteeing them support by familiarizing them with the disease and its effects, as well as by equipping them with certain means to overcome some of the problems that arise from it.
She noted, in a similar statement, that this disease creates a state of rejection in the patient and plunges them into a depressive state, because the complications of the syndrome compromise normal functioning and the completion of daily tasks.
Marfan Syndrome is caused by mutations in the gene encoding a protein called fibrillin, which allows connective tissue to maintain its strength.
The symptoms of Marfan Syndrome can vary from mild to severe. Many people suffering from Marfan syndrome never notice the symptoms. In some, symptoms may not appear until adulthood.
