Karthi turns hero for kids with rare diseases

Chennai:

Reel life hero Karthi turned a hero for children with rare diseases as he donated Rs 17.5 lakh to Lysosomal Storage Disorders Society (LSDSS) to facilitate their efforts in helping patients receive much needed diagnosis and critical treatment.

Karthi in a different role as Cause Ambassador of LSDSS presented the cheque to 16-year-old girl Divya, who is suffering from Lysosomal Storage Disorder, a rare disease which occurs in about one-in-5,000 live births.

LSDs, is a group of about 45  rare genetic disorders trigerred due to the deficiency of specific enzymes in special compartments triggered due to the deficiency of specific enzymes in special compartments (lysosomes) of the cells.

Interestingly, it was his brother Suriya, another noted Tamil film actor, whom Karthi credits for as his role model for trying to reach out to LSD children. “There is no treatment for the disease. Through the medicine one can only reduce the pain. The medicines cost the patient per month Rs two lakh and the children need it lifelong,” the actor said while urging the government to help the patients suffering from rare diseases.

Dr Sujata Jagadeesh, genetic consultant for Mediscan and medical consultant for LSDSS, told Express that about 135 to 140 children from the state are undergoing treatment for LSDs. She said the state has only three hospitals which treats this disease and all are based in Chennai. These include Government Institute of Child Health, Child Trust Hospital and Mediscan. She says that one of the reasons for the disease is consanguineous marriages, which is common in the state.

She said the biggest problem the society faces in combating the disease is lack of financial aid. “We are now approaching the Tamil Nadu government which is likely to provide Rs one lakh aid to children with rare genetic disease. “The parents of these children should be earning below Rs 72,000 per year,” she said.