Gandhi Hospital to treat girl with rare disease

Hyderabad: The Gandhi Hospital has taken up the treatment of an 18-year-old girl Naga Sai Shree Ramya who has been suffering from a rare genetic disorder called Mucopolysaccharidosis - Type VI.Dr P Shravan Kumar, Superintendent, Gandhi Hospital, constituted an emergency medical board for treatment of Ramya with 10 specialists. They explored the best possibilities of treatment. According to official date, only three patients with this disorder are in India. Dr Shravan convinced Ramya for admission in Gandhi Hospital so that all required diagnostic tests would be conducted.

Dr Shravan said in Ramya’s case, her brain was fully active. “But, her body is getting degenerated. That is why she is able to contact everybody and studying graduation second year,” he said. Regarding the treatment strategy, he said earlier institutional diagnosis was not done anywhere. “A DNA test is important because she has genetic disease. Multiple organs - heart, eyes, bones, spine and skin - and calcium and hormone levels are involved. We had to address every part of the organs,” he said. Further, the superintendent said they were trying to evaluate every organ. “She is having congenital heart disease and spinal cord is getting compressed.

With the compression of spinal cord, she is unable to walk and stand and became bedridden, he said. On part of drugs, he said after thorough evaluation, they would like to bring in a special drug called Naglazyme enzyme from the USA. It costs Rs 7.5 lakh per dose and as many as Rs 3.50 crore per year. In India no doctor has experience in the use of enzyme. “After searching internet, we found serious side effects of enzyme. We are also afraid whether the patient would sustain with this. A European drug agency report said this drug can cause harm to the patient,” he said. “The enzyme has not been marketed in India.

We need approval from the Union government,” he added. Speaking to The Hans India, Naga Sai Shree Ramya said her dream was to become an IAS officer. She requested the government to send her to the US so that she would get the treatment free of cost as it is available there. For the past six years, she approached almost all the hospitals for treatment, but in vain. After that she knocked the High Court door. The High court gave order to the Telangana government to treat her in hospital in May this year. When the government did not respond, the counsel for Ramya filed a case of contempt of court. Then the government came forward to treat Ramya. She had two hospital options for treatment - Osmania General Hospital and Gandhi Hospital. However, Dr Shravan took initiative to treat her.