Genetic disorder cases on rise in Sindh villagesDecember 23, 2013
Karachi: Untreated genetic diseases in rural areas of Sindh province are causing miseries and deaths; however, affected poor families suffer silently as they cannot afford costly treatment of their near and dear ones.
A research report of Pakistan Relief Foundation (PRF) titled “Death and disease due to genetic disorders in Sindh” said a large number of people have been suffering death and disabilities due to genetic disorders. Due to apathy of the authorities and illiteracy and ignorance of the people several families are suffering from deadly diseases and death due to genetic disorders.
The researchers say the genetic disorder occurs due to close family inter-marriages. The affected persons develop various disabilities including deformation of limbs, loss of sight, hearing and speaking faculties and mental retardation. If left untreated many such diseases also result in death.
The experts add that if the disease is diagnosed at an early stage it can be cured. However, unfortunately the families who are suffering from the disease did not receive any medical assistance. The government is perhaps not even aware of the suffering of these people due to this deadly disease.
PRF has taken its first step in locating seven families and provided them medicine and other assistance, PRF Chairman Haleem Adil Sheikh said. He stresses the need of sustainable medical and humanitarian support to the affected families. The government should take immediate notice of this hitherto unnoticed public health disaster causing immense suffering unknowing and poverty stricken people of Sindh, he said.
Shaikh suggested that a province-wide survey campaign should be launched by the Sindh government ministry of health in partnership with civil society, to locate and record the families/patients suffering from multiple disorders leading to permanent disabilities.
The government should transfer the affected families to receive advance medical facilities in Karachi or Islamabad where nuclear medical facilities are available. A special fund should be created by the government to assist families who are suffering from genetic disorder diseases, provide them monitory assistance from Baitul Maal for their livelihood.
International NGOs dealing with healthcare issues should also be sensitized to take notice of this health hazard.
Genetic disorders are on the rise due to culture of Interfamily marriages in this region. An awareness campaign should be launched to discourage interfamily marriages.
Due to illiteracy and ignorance, disabilities are considered by the affected families as a curse or result of black magic and these families waste their limited resources on dark magicians and other unscientific means. Proper Education regarding these medical related issues should be provided to the public there.
Mobile medical teams should be formed to examine these families where any such case is reported. So that their genome could be studied and they should be promptly treated in accordance with international guidelines to limit their disability and save their lives.