Chennai: Actor Karthi, cause ambassador of LSD - Lysosomal Storage Disorders (a group of 45 rare genetic disorders that are life threatening), and LSD activists urged the Central and state governments to come out with a policy framework to detect LSD among children at peadiatric stage and launch appropriate intervention programme inclusive of life-long financial support to the affected.
Also known as ultra-rare disorders, LSD has no cure at present. At an awareness programme held at the Bharatiya Vidya Bhavan, here on Wednesday, the members of LSD Support Society, Fetal Care Research Foundation (FCRF) and others, called upon the government to facilitate treatment and provide financial aid to meet e treatment cost. “There is an urgent need to create awareness among the people and the relatives of LSD affected about this rare disorder that affects children at a tender age.
This apart, the treatment cost is very expensive and out of the reach of many,” said Karthi Sivakumar. Terming it unfortunate that children suffer from this genetic disorder, he said government could extend its hand of support to the affected.“There is no cure for this genetic disorder. The affected child lives on medication for life,” claimed Dr S. Suresh, managing trustee FCRF and added that early detection and treatment could improve the quality of life of LSD patients. He said the peculiarity of LSD is that the genes display altogether a different expression and often difficult to differentiate between normal and abnormal behaviour.
Citing the June 9 Karnataka high court order directing the Indira Gandhi Institute of Child Health, Bengaluru, to treat free of cost children affected by LSD, Manjit Singh, president LSDSS, said all state governments and the Centre should include LSD in the health screening programmes and direct pediatricians to check for symptoms and take up genetic testing.
Dr Sujatha Jagadeesh, Clinical Geneticist and Director, Mediscan, said the LSD activists, accompanied by Karthi have planned to call on chief minister Ms. J. Jayalalithaa in August and impress upon her the need to introduce detection and financial support programmes for LSD patients.
