Karthi Sivakumar is now a �Cause Ambassador
Posted on: 25/Jun/2011 4:05:50 AM - No. of views : (3250)
Karthi Sivakumar, the new Kollywood heartthrob is now treading the path of a social cause. He has joined hands with a patient group to help the sufferers get the right diagnosis and treatment. These patients are suffering from a category of rare genetic diseases called �Lysosomal Storage Disorders� (LSDs).
Said Karthi at the press conference organized here, �I was distressed the first time I saw these kids suffering so much so early in their lives. It made me conscious about our and the society�s responsibilities towards them. We need proper awareness, diagnostic facilities and funds to support the treatments. I�ll be glad if my involvement could lead to a positive future for these kids.�
LSDs are disabling and life threatening. There are about 45 different kinds of LSDs caused due to lack or malfunctioning of a certain enzyme in the body. Explained Dr Sujatha Jagadeesh, Consultant Clinical Geneticist, Fetal Care Research Foundation �Only six types of LSDs have a treatment option. While LSDs as a group have an incidence of 1 in 5000, the treatable LSDs are extremely rare and have an incidence ranging from 1 in 40000 to 1 in 120000. These are genetic disorders and affect children as well as adults. LSDs are disabling and life threatening. However, if treatment is provided in time, the patients can lead a normal life. I come across about 3 new cases of LSDs like Pompe, Gaucher, Fabry and more every week.�
The program organized by the Lysosomal Storage Disorders Support Society (LSDSS) showed a heartening picture of about ten patients and their families. The excitement in the children to meet their role model and the hope on their parents� faces to see the support from Karthi was visible. Added Mr Prasanna Kumar Shirol, President, LSDSS and also father to a 12 year old Pompe patient �We set up this society early last year to together support the patients and their families. We are delighted to have Mr Sivakumar with us and we are certain that this association will be a remarkable step towards our objective of making the lives of these little kids better.�
The first enzyme replacement therapy (ERT) to be developed for the treatment for LSDs was for Gaucher disease, the most common of the LSDs. Renewed hope has also emerged in the management of three other such diseases namely Fabry, Pompe and MPS I, II & VI.
