‘Pakistan lacks facilities for Spinal Muscular Atrophy patients’

By Our correspondent

Islamabad: Strive Trust with the collaboration of multi-national pharma companies organised an international conference to create awareness among the public about the disastrous effects of Spinal Muscular Atrophy (SMA) and its treatment. Pakistan is among the countries that have hardly any facilities, special people, particularly for SMA patients.

Spinal Muscular Atrophy (SMA), an inherited disease that affects nerves and muscles, causing muscles to become increasingly weak leading to permanent disability. It mostly affects infants and children but can also develop in adults. Approximately 10,000 to 25,000 children and adults are living with SMA in the United States. There is no data available about SMA patients in Pakistan, however, it is believed that the number in thousands. The rare disease affects one out of 6,000 to 10,000 children.

Former Senator and educationalist Sehar Kamran in her speech as chief guest emphasized the need for collaborative efforts to make the treatment available and affordable for patients in Pakistan. She said there is a need to establish an educational channel at the state level. "

Had such a channel been available, the experts who had been sharing valuable knowledge would have been accessible to a wider audience" she added.

Pakistan Tehreek e Insaaf MNA and Parliamentary secretary of human rights Lalchand Mali said, “Government is sensitive to ensure health facilities to every single citizen for which it has introduced Insaaf health card. He said differently-abled persons should take advantage of this facility.”

He said Pakistan Bait-ul-Maal is also a facility available for the needy. He assured his ministry's cooperation for any steps that can improve the quality of life of persons with disabilities. He mentioned that there is no permanent cure for SMA and treatment available is very costly around the globe. “I will raise the voice about SMA disease in concerned ministry and the federal government to ensure the facilities for the affordable treatment,” he maintained.

Founder Strive trust, Yasir Khan, himself a victim of SMA said that about 60% of patients have severe type also known as Werdnig-Hoffman disease. Symptoms appear at birth or within an infant’s first six months of life. Infants with this type of severe SMA have difficulty swallowing and sucking. He lamented that people at the policy level and government institutions were not sensitive about disabled persons. Many persons with disabilities who can be treated, die because they are not provided proper treatment. He said since the treatment of SMA is available internationally, the government of Pakistan must ensure that it is available to patients in Pakistan.

Jasdev Singh Sandhu and Nerish Sasedharan, leading Asian Robotics Company Cyberdyde from Japan shared their views about SMA disease. Robotic technically has been proven to assist people who are recovering from strokes and people who have abstained injuries that affect their daily tasks. They announced plans to launch their products in Pakistan next year. The speakers and neuro experts agreed that generally there is no cure for SMA but the treatments depend upon the type of SMA and symptoms. Many people with SMA benefit from physical and occupational therapy and assistive devices, such as orthopedic braces, crutches, walkers and wheelchairs.