You may remember him as the person who essayed the lead character of an RJ (radio jockey) in the movie ‘One Little Finger’ (2019), directed by Rupam Sarmah. The movie premiered at Cannes and won multiple awards at different festivals.

Pic source: Instagram: Sayomdeb Mukherjee

Sayomdeb Mukherjee also won the Best Actor award at the Cincinnati Film Festival for his performance.

But the Kolkata native reached this stage after years of pain and self-doubt owing to his rare genetic disorder, Dopamine-responsive dystonia (DRD), also known as Segawa syndrome (SS).

Mukherjee’s body did not make enough dopamine, an enzyme that helps transmit messages between nerve cells.

Without dopamine, neurons could not transfer information to the brain, and communication between different brain centres did not happen. While he was able to listen and comprehend, his motor and speech centre did not work.

The stiffness prevented him from moving or folding any body part. Many times, he even thought about ending his life. To make up for all the time that he had lost in search of a cure, Mukherjee became an author, a radio jockey, and an actor.

Behind these titles is a life filled with sedatives, anti-allergic tablets, and painkillers that Mukherjee’s father, Dr Pabitradeb, would prescribe him to ease his pain.

“If I am alive today, it is because of my parents. Doctors are surprised to know that I survived without dopamine supplements, tablets given for DRD, for so many years,” Mukherjee says.

As he adds, “My physical pain would be tackled with the medications temporarily but no one or nothing prepares you for the mental agony.” “Seeing children of your age playing, going to school, and having a childhood without a wheelchair made me think about the purpose of living several times,” Mukherjee shares.

Only when he was 25 was a doctor able to diagnose Mukherjee’s condition, giving him a new lease on life.

“My condition improved significantly. My muscles relaxed, the stiffness reduced and body pains lessened,” he adds. Mukherjee could now talk. He began advocating for the rights of people who were disabled.

He also completed his certified education (Class 12 board exams) through the National Institute of Open Schooling (NIOS). In 2011, Mukherjee was offered the radio show ‘Haal Chhero Nah Bondhu’ (‘Never Give Up – Dear Friend’). He was awarded the Radio Excellence Award and Best Bengali Radio Jockey.

Post his show, he wrote two books — ‘52 Steps’ on his radio experience and ‘Memoirs of Time’, his autobiography, and went on to join an NGO.

“At every stage of my life, I have set targets and the heights to achieve them to increase my productivity. This helped me a lot as even today, the awareness around DRD is very little. Through my work, I want to build a more inclusive society,” Mukherjee adds.