Emphasis on support and awareness


Parents of children with Lysosomal Storage Disorders (LSDs) shared their experiences at an event hosted by the Lysosomal Storage Disorders Support Society (LSDSS) on Tuesday.

Karthika, a parent, said that only a year after her son was born was she able to notice what was happening to him. Even then, medicines for his condition were not available for one full year, she said. “Initially, we were struggling to even carry him as a baby as he had a swollen stomach and legs. After we got access to the right medication for him, he has now improved,” Ms. Karthika said.

Her son is in class 8 in a city school. Actor Karthi spoke about the need to create more awareness of the existence of such a support group, which will be of help to parents and doctors.

Sujatha Jagadeesh, a doctor, said: “We are trying to ensure that more parents and even doctors are made aware of these rare disorders. Often, the expense incurred to treat them is high and not all families can afford it,” she said.

S. Suresh, chief medical director, MediScan, said corporate companies helping by way of funds through their Corporate Social Responsibility (CSR) programmes would help many parents who were struggling to meet the expenses of treating their children.

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Printable version | Dec 14, 2019 6:17:04 AM |

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