Bengaluru: Running to support patients with rare diseases

Bengaluru: “I don’t understand why people stare at me,” says an innocent Nihal Bitla who shares the same enthusiasm of any other teen his age. But he’s different from the others as the fifteen-year-old suffers from a rare disease called Progeria.

(Remember the Amitabh Bachchan-starring movie ‘Paa’ which threw light on the plight of a patient suffering from this unusual disease?) Progeria is a fatal disease that affects only 1 in 4 million people and is also known as Hutchinson-Gilford syndrome.

It is an extremely rare, progressive, genetic disorder that causes children to age rapidly and develop ailments normally exhibited by old people. This disease is manifested in the form of wrinkled, shrivelled skin, stiffness of joints, hip dislocation, generalized atherosclerosis, growth failure, loss of body fat and hair, cardiovascular (heart) disease and stroke.

Sadly, for Nihal’s family, who want him to lead a normal life, his is more than just a race against time. “Even when I wait at the airport for boarding, it is extremely difficult because people are constantly giving us curious stares and my son gets anxious because of that. Sadly, because of no social awareness  about this disease, it becomes burdensome for my son,” explains his father Srinivasa Bitla.

Nihal and his father had come to the city to participate in the ‘Race for 7’—Race against Rare Diseases organised today by The Organisation of Rare Diseases in India (ORDI) on the occasion of Rare Disease Day.

Srinivas said, “Although the movie 'Paa' was made to bring awareness about this disease, as a result of it our son’s life became extremely difficult as students in the school started making fun of him. It became so severe that we had to get him out of school in the fourth standard itself.”

The primary objective of Nihal’s visit to Bengaluru is to create awareness for Progeria and to find more kids like him who can avail of treatment at the Progeria Research Foundation (PRF), Boston. 

According to Progeria Research Foundation, there are approximately 60 kids (#finding60inindia) in India suffering from Progeria.

“I love robots and I love Amir Khan,” says a thrilled Nihal. He adds that he recently went to Delhi to watch Honda's Asimo robot. “I love painting,” he confesses.

‘Race for 7’ a hit
Matching strides with patients suffering from  rare diseases, over a thousand Bengalureans participated in ‘Race for 7’, organized by the Organization for Rare Diseases India (ORDI).