Rajini inaugurates voluntary organization for treatment of children with rare disease

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Thursday, May 03, 2012

Rajini inaugurates voluntary organization for treatment of children with rare disease

Yesterday, superstar Rajinikanth inaugurated a voluntary organization for treatment of a rare disease ‘Cystinosis’ which affects young children.

In the inauguration ceremony for the organization, medicines worth Rs. 2 lakhs were distributed to two children affected by the cystinosis disease. 

The organization, which is the first ever such endeavor, is named ‘Sabiens Health Foundation’. 

Rajini, who participated as special guest for the event, conveyed his support to the organization. 

The kidney medical department head of Miad Hospital and head of Sabiens health foundation, Rajan Ravichandran, speaking regarding the cystinosis disease said ‘The disease cystinosis is a genetic disorder occurring among children.  All over the world, 2000 children are affected by the disease.’

Nobody knows how much children are affected by the disease in the country.  Through Sabiens health foundation, it has come to light that about 6 children are affected by the disease. 

The disease could not be diagnosed when the child is born.  But, when the child is growing, when the growth with respect to age is not occurring, or when there is sugar content in the urine, or when amino acid passes along with urine, there needs to be suspicion that the disease exists. 

Immediately, the eye should be diagnosed to ascertain that there is no problem with the cornea.  This should be done by taking the child to the appropriate medical practitioner.

If the disease is diagnosed beforehand, a replacement of the kidney could be done and thus assure appropriate growth in the child.

As far, two children have received free medicines.  Also, for treatment of another two children, Rs. 2 lakhs is being collected as donation.

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