During daytime, 22-year-old Dharmendra can see and walk around with some help. But at night he is left hitting walls while trying to find his way. The situation is even worse while he seeks government’s help for the disorder. Despite approaching several persons, he has received a meagre pension of Rs 1,500.
Delhi-residents Dharmendra and his five-year-old brother Vishal suffer from Mucopolysaccharidoses (MPS), a rare and progressive genetic disorder that occurs in one in every 25,000 people. The annual cost of treatment varies from Rs 35 lakh to Rs 1.75 crore depending on the person’s body weight.
“Out of compassion, doctors at AIIMS do not charge us for medical tests,” Dharmendra said.
But he and his brother need a combined funding of Rs 1.6 crore annually to be able to live a normal life. Meanwhile, both are losing eyesight and their legs and fingers are getting deformed with each passing day.
In India there are only 400 to 500 people diagnosed with MPS, of which around 40 live in Delhi and National Capital Region. MPS is a part of 45 rare genetic disorders called Lysosomal Storage Disorder (LSD). Only six of the LSDs are treatable.
MPS occurs due to specific enzymes deficiency in special compartments of cells. While many succumb to the disease with its progression, those alive suffer from disorders such as vision loss, coarse face, enlarged liver and spleen, hearing loss, short stature, joint deformities and abnormally low weight.
The high cost of treatment has only added to the government’s apathy towards these people. Treatment involves an expensive enzyme replacement therapy, which requires intravenous infusion of enzymes to patients at regular intervals for entire life.
Manjit Singh, national coordinator of Lysosomal Storage Disorders Support Society said the government had assured considering treatment of MPS in 12th five-year plan, but it hasn’t materialised.
Singh’s sons Prince and Raja suffer from MPS 2, also known as hunter syndrome. Along with 150 such parents, he started LSSDS to create awareness about the disease and to put pressure on the government for assistance.
But despite promises, nothing has materialised so far. Singh says he met chief minister Sheila Dikshit numerous times. But her response was only limited to nice talks.
“She said she can’t work with such a big budget,” he said.
Dr Ratna Puri at Sir Ganga Ram Hospital says a few organisations have been treating some of these patients, but majority of them are without any medical help.