Karthi turns hero for kids with rare disorders

Follow us:WhatsappFacebookTwitterTelegram.cls-1{fill:#4d4d4d;}.cls-2{fill:#fff;}Google NewsActor Karthi turned a real life hero for children with rare disorders as he donated Rs 17.5 lakh to the Lysosomal Storage Disorders Society (LSDSS) to facilitate their efforts in helping patients receive the much-needed diagnosis and treatment.Karthi, as the Cause Ambassador of LSDSS, presented the cheque to 16-year-old Divya, who suffers from Lysosomal Storage Disorder, a rare disease that occurs in about one in 5,000 live births.LSDs are a group of about 45 rare genetic disorders triggered due to the deficiency of specific enzymes in special compartments (lysosomes) of the cells.Interestingly, it is his brother and actor Suriya, whom Karthi credits as his role model for trying to reach out to LSD children. “There is no treatment for the disorder. Through medicines, one can only reduce the pain. The medicines cost a patient Rs 2 lakh per month and the child needs to consume it lifelong,” the actor said, while urging the government to help patients suffering from rare diseases.Dr Sujata Jagadeesh, genetic consultant, Mediscan, and medical consultant for LSDSS, told City Express that approximately 135 to 140 children from the State are undergoing treatment for LSDs. She said that the State had only three hospitals that treated this condition and that all were based in Chennai.These include the Government Institute of Child Health, Child Trust Hospital and Mediscan. She added that one of the reasons for the disease was consanguineous marriages (marriage between cousins), which are common in Tamil Nadu.She added that the biggest problem society faced in combating the disorder was lack of financial aid. “We are now approaching the Tamil Nadu Government which is likely to provide Rs 1 lakh to children with rare genetic disease. The parents of these children should be earning below Rs 72,000 per year,” she said.first published:September 08, 2012, 08:34 ISTlast updated:September 08, 2012, 08:34 IST 
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