‘Need aid to support Lysosomal Storage Disorder’

Every week, one child in the city is diagnosed with a genetic disorder called Lysosomal Storage Disorder (LSD).

Nearly 45 children in the city and 175 in the state await treatment support as the treatment costs `10 lakh. Doctors say that without treatment, these kids are not likely to live beyond 10 years.

Some of the Symptoms of LSD

Developmental delay, deafness and/or blindness, seizures, dementia bruising, fatigue, anaemia, low blood platelets, enlargement of the liver and spleen and breathlessness resulting from an enlarged stomach. The children may also suffer from cardiac problems.

Causes of LSD

LSD is caused by the lack of a certain protein that is required to metabolise waste material in the blood stream. People suffering from the condition, do not have the required enzyme and there is a backlog of undigested

Principal Secretary, Department of Information Technology, Biotechnology and Science and Technology, I S N Prasad says that the routine government schemes might not help in solving the problem as the need is lifetime therapy.

“The government is already bearing the costs of regular treatment demands. We need a partnership model where health insurance companies will render support,” he told Express. He added they would need assistance from the Centre.

 Prasad added that he would forward the appeal to the health department and suggest a treatment model.

In August, patient groups submitted an appeal to the Department of IT, BT and S&T asking for treatment support.

“The Lysosomal Storage Disorders Support Society (LSDSS) has counted almost 45 children in the city between the age group of 1 and 12 years suffering from LSD,” said Preethi G, co-ordinator of the LSDSS.

 “Out of these, only seven are undergoing treatment through charity,” she added.

The treatment for the disorder costs between Rs 10 and 40 lakh. “Dosage of drugs increases with the increasing body weight and age. This means the treatment support required is lifelong,” said Dr Meenakshi Bhat, consultant in clinical genetics, Centre for Human Genetics and Indira Gandhi Institute of Child Health (IGICH).