The Muscular Dystrophy Patients Association in Libya announced the death of the child Zahra Bilal Ismail, one of the muscular dystrophy patients targeted for gene injection from the city of Tajoura, at the age of one year and six months.
The association explained that the cause of death was delayed gene injection and discontinuation of the drug Risdiplam, according to the association.
The association pointed out that Zahra was 8 months old when she was registered on the list of cases nominated to receive the gene and remained waiting for another 8 months and then passed away.
Last July, the association announced the death of three muscular dystrophy patients within one week, namely “Bayan, Mansour, and Naji,” expressing its dissatisfaction with the lack of provision of medications, genetic tests, and the opening of a health care unit for atrophy patients.
On July 23, the head of the Government of National Unity, Abdel Hamid Dabaiba, issued his instructions to provide genetic laboratories for muscular dystrophy patients and their families, and to begin procedures for supplying them, with the necessity of continuing to conduct genetic analyses for patients and their families.
Dabaiba stressed the urgent completion of treatment for cases under two years of age, and the provision of specialized and general medicines related to this disease through manufacturing companies.
Al-Dabaiba directed the necessity of implementing the physical therapy program internally, through the agreement concluded by the Therapeutic Services Development Authority with one of the specialized companies, and giving importance to this program.
Last June, a number of muscular dystrophy patients called on the unity government to find a radical solution to the health obstacles they face throughout the country, especially those related to their access to medication.
Source: Muscular Dystrophy Patients Association in Libya
2024-08-14 22:18:13