KUWAIT: Health Ministry Assistant Undersecretary for Allied Medical Services Dr Abdullah Al-Faras said Kuwait is the first to provide treatment for patients with Duchenne muscular dystrophy in the Middle East. Duchenne muscular dystrophy is a severe type of muscular dystrophy affecting boys. The onset of muscle weakness typically begins around the age of four with rapid progression.
Al-Faras, representing Health Minister Dr Ahmad Al-Awadhi, spoke during the ceremony organized by Kuwait Medical Genetic Center (KMGC) in cooperation with the Foreign Ministry on the occasion of World Duchenne Muscular Dystrophy Day. He said it is an autosomal recessive disease linked to the X chromosome and considered one of the most common types of muscle dystrophy, as it affects 1 out of every 3,500 males born. Dr Al-Faras said the Ministry has been tackling the disease since 2000, and KMGC has recorded more than 130 Duchenne cases in Kuwait.
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The disease has killed patients in their 20s and 30s, but hopes were renewed in 2016 due to the understanding by the doctors on the nature of the disease after realizing the type of genetic defect and its location in the human genome. He said Duchenne needs comprehensive and integrated health and social care that starts as soon as the patient is referred to KMGC and carrying out the full genetic analysis. Doctors care for the patients through an integrated medical approach in all child departments. They monitor their breathing, digestive systems, and physiotherapy.
Assistant Foreign Minister for International Organizations Affairs Abdulaziz Al-Jarallah said Kuwait will continue to create awareness of this rare disease. He said that Kuwait sent a proposal to create Duchenne awareness themed ‘World Day for Duchenne Muscular Dystrophy Awareness’ at the United Nations on September 7. This was adopted by 128 countries.
Meanwhile, head of KMGC, Dr Laila Bastaki, said Kuwait’s proposal at the United Nations was a distinguished approach. She said that Kuwait has recorded around 141 Duchenne cases of various ages till date. The disease occurs due to a genetic defect, but in some cases, it may occur suddenly without a genetic origin. Dr Bastaki said the Ministry has been providing the medicines despite their high cost since 2016, and Kuwait is among the first countries in the region to do so. She said that priority was given to children aged 4-6 years despite the medicines’ high cost (about $3 million).