Individuals with rare diseases and their parents visited some pandals in the city on Friday to assess their accessibility, ability to manage the crowd if an individual with a rare disease falls ill and attempt to create both awareness and empathy in society.
The knowledge about rare diseases is negligible or limited among people, said a member of Rare Warriors of Bengal Association — an organisation that works with individuals with rare diseases and their families.
It is one of the organisers of the Puja Parikrama, held in collaboration with Reborn child developmental centre.
The objective of the programme was to celebrate the “spirit of Durga Puja” while spreading awareness about rare diseases.
“We wanted to raise awareness about rare diseases because with awareness, there would be early diagnosis and thus early intervention,” said Shikha Metharamani, co-founder and president of the association.
Metharamani’s 22-year-old son was diagnosed with Prader-Willi syndrome, a genetic disorder, when he was nine months old.
“The occurrence of rare diseases has gone up, which also points to the fact that there is more knowledge about it and more screening for rare diseases,” she said.
Culturally and socially, the taboo around rare diseases still exists. It puts up barriers in front of parents who are reluctant to go out or talk about the disease.
“What is required is public awareness, inclusion and empathy,” said Metharamani.
Last year, a group of individuals with rare diseases went on a Puja tour,
but they were unable to reach some of the pandals because of poor accessibility and
inadequate crowd management.
This year, they visited around 115 pandals divided into groups on Thursday and Friday. Each group had one individual with a rare disease and their parent.
The association said they understood the challenges of organising a Puja of this scale.
“Puja is for everybody, and we don’t expect the organisers to make way for us because it is difficult to do so in that kind crowd. But there could be intention and alternatives,” said Metharamani.
They found that the many of the organisers were unaware of rare diseases.