KASUR: A teenage girl died of a rare genetic disorder disease, called Wilson’s disease, here on Nov 13.
Shahar Bano, a matriculation student, showed the signs of the disease six months ago, her father, Muhammad Sarwar, told Dawn. He is a clerk at 8-Club Road in Lahore.
He said that some six months back, when Bano returned from school, she showed physical and mental disorders.
The family first tried faith healers and saints’ shrines across the country for two months. By and by, Bano lost her speech and eyesight and developed mental disorder. Seeing no signs of recovery, they turned to doctors, and after lots of visits to lots of doctors, a doctor at the Sialkot Combined Military Hospital finally diagnosed Bano with Wilson’s disease and started her treatment.
Later on, she was treated at the Sharif Medical Complex in Raiwind where she died after remaining under treatment for four months.
Wilson’s disease is a rare inherited disorder that deposits copper in liver, brain and other vital organs of the body. The symptoms appear at the age between 12 and 23.He said that the only medicine for its treatment, Penicillamine, is also very rare. He said they had to wait for 28 days to get the medicine and the delay deteriorated her daughter’s condition.
He said that he collected a few tablets from other patients in Pakistan, and later on he contacted pharmaceutical companies in India and China.
He succeeded to manage a pack of 100 tablets from China at Rs80,000. He said there were only six patients of Wilson’s disease in the country.
He said there was no particular health facility in the country to diagnose and treat Wilson’s disease. Similarly, the medicine is also rare and for that reason, it is out of the reach of the common man.
Mr Sarwar, who lives in a rented house, said that he had spent his savings and borrowed money on the treatment on his daughter. He said in all he had spent Rs800,000 to save her life.
Assistant Professor of Psychiatry Dr Faheem Khan from the Azra Naheed Medical College, Lahore, said the specific medicine was manufactured by only one company in the world because of the rarity of the disease.
He also said that the investigations (lab tests) of the disease were very expensive as there was no facility at the government level. He urged the government to make special arrangements for such patients.
Lahore General Hospital’s Dr Asim Hameed Sheikh said that there was an urgent need to inculcate awareness among the masses about these diseases as many patients died without any treatment.
Published in Dawn, November 17th, 2016
