Gaucher disease awareness meet held

Chenna

Gaucher disease awareness meet held

more-in

Lysosomal Storage Disorders Support Society (LSDSS), a patient group association for Lysosomal Storage Disorders (LSD), organised a Gaucher awareness programme on Saturday.

The aim of the programme was to raise awareness on Gaucher as a disease and its symptoms, support the Gaucher community and throw light on the developments at the policy level, according to a press release. Gaucher’s disease is a genetic condition in which fat gets deposited and builds up in different organs and bones of the body.

Actor Karthi Sivakumar, who is the cause ambassador of LSDSS, took part in the programme. A. T. Arasar Seeralar, director of Institute of Child Health, said that Gaucher disease was a serious condition and debilitating for patients. Treatment was available for the disorder through which patients can lead an almost normal life. This event was a means to highlight the positive change that timely treatment can bring in the life of a patient, he said.

A representative of the LSDSS group said that the Tamil Nadu government has formed the State Technical Committee that has identified 27 patients for treatment. However, 10 patients have already lost their lives due to lack of treatment. There has been no headway in the processing of applications at the Centre. The representative appealed to the Centre to take immediate action and the State to be more persuasive to request for funds from the Centre, the release said.

Sujatha Jagadeesh, genetics specialist, MediScan, said since there were many symptoms, there was often a delay in diagnosis and treatment. The onus lies on the medical fraternity and medical education system to ensure that treating physicians are able to diagnose the disorder at the right time, she said.

S. Suresh, director of MediScan, and V. Ramesh, senior advocate, were present at the meet.