20th November 2009 : (Courtesy Gulf-times.com Qatar) – Providing education on early diagnosis and medical intervention, diets and prevention of homocystinuria in children were the major issues taken up at the third Homocystinuria Family Day’ held yesterday at the Hamad Medical Education Centre Qatar.
Other objectives of the event, being supported by Orphan Europe, were to improve quality of life of patients and increase awareness about the disease among families through continuous and life long dietary education.
Homocystinuria is a rare progressive metabolic disorder, common among children in Qatar and the GCC region, due to close blood or consanguineous marriages.
Speaking to mediapersons at the event yesterday, HMC’s Clinical and Metabolic Genetics head Dr Tawfeg Ben-Omran said acquiring knowledge about the disease through experience sharing among affected families was essential to fully understand the disease, its medication and dietary management.
Metabolic dietician Moufida Ghedamisi said that both diets and medications should go hand-in-hand in the treatment of the disease. “Once a child reached six months up to two years, complying with the dietary plan become very challenging.
Orphan Europe’s Middle East manager Tony Zbeidy said the organisation was supporting children affected with homocystinuria in Europe and Middle in early diagnosis and treatment.
“There are over 1,000 genetics and metabolic disorders, but only 200 including homocystinuria, have treatments.”