Gaucher patients knock at Modi's door
Posted on Jul 26 2014 | IANS
New Delhi, July 26 : About a 100 Gaucher patients and their family members Saturday gathered outside Prime Minister Narendra Modi's residence here, demanding government help in curing the genetic disease.
Policemen deployed outside the house asked them to disperse as the place falls under the high security area. They were later allowed to go to Jantar Mantar in central Delhi.
"We gathered here to submit a memorandum, demanding government support in curing this genetic disease, which causes mental disorder among children from birth," Manjeet Singh, a member of Lysosomal Storage Disorders Support Society (LSDSS), an NGO, told IANS.
Gaucher disease, which affects about 10,000 people worldwide, and has at least 500 registered patients across India, is an inherited genetic condition that halts the mental and physical growth of children.
"My five-year-old son developed this disease since birth. We noticed the problem when he was two years old. He never walks and his growth has also halted," said Neha, a resident of Ghaziabad.