Source: Tehran Times
TEHRAN - The founder of the muscular dystrophy association of Iran, who herself is suffering from limb-girdle disease, has said that about 35,000 patients are fighting with the disease in Iran, ISNA reported on Tuesday. Many of these patients do not know the dystrophy association or are not even correctly diagnosed with the disease, Ramak Haidari noted.
Dystrophy leads to muscle degeneration. Most forms begin in childhood. Damaged muscles become progressively weaker. Most people who have the condition eventually need a wheelchair. Other symptoms include trouble breathing or swallowing.
When the patients start using wheelchair it gets more difficult for them to go to school as the schools in Iran are not adjusted and equipped for such students and unfortunately they most often drop out of school, Haidari said.
Dropping out of school will usually result in isolation and mental disorders for both patients and their families, she lamented.
Uninterrupted sessions of hydrotherapy and physiotherapy and vitamin intake are strongly recommended for these patients, none of which are covered by health insurance companies, she added.
"As the disease progresses, the patients will experience shortness of breath due to lung deterioration and they need ventilators," she pointed, adding that, each ventilator costs about 200 million rials (about $6,700) which is not provided by any organization. Just recently, some philanthropists have supplied the community with some ventilators, she noted.
Currently, the dystrophy association offers various services to the patients, such as ventilators and wheelchairs, she stated.
"We are able to construct a center that provides the patients with diagnostic, hydrotherapy and physiotherapy services but we need a land stretching 600 meters," Haidari noted.
Haidari explained that dystrophy is a genetic disease and for families with a history of the dystrophy diagnostic tests will be carried out on the fetus before week 17 of pregnancy.
"In case the fetus is diagnosed with the disease it will be aborted legally," she highlighted.
Sadly the genetic tests are not covered by insurance companies either and sometimes they cost up to 120 million rials (about $4,000), so the disease will pass on from generation to generation in many families.
Dystrophy has been largely overlooked by officials. Unless they take necessary measures, the situation will soon get out of hand, she warned.
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