Sagar Baheti was a competitive cricketer till his mid-twenties, playing in university and zonal matches. In 2012, he realised his ability to spot the ball was waning, and multiple doctor’s appointments, lens prescriptions and meetings with specialists later, he was diagnosed with Stargardt’s disease in mid-2013. The degenerative disease, which causes spots to appear on the retina and lead to progressive vision loss, is classified as one among around 7,000 rare diseases.
According to Baheti, his condition affects around one in half a million people, which means that while research is being conducted, doctors do not have enough data to come up with an effective cure as yet. That hasn’t stopped Baheti from trying to adapt to his condition however. With the aid of accessibility settings on his mobile phone and a little bit of planning, he is trying to make the most of his condition, and help others by raising awareness.
- In an attempt to raise awareness about rare diseases, the Organization for Rare Diseases India (ORDI) is organising ‘Race for 7’, a 7,000 metre walk for the 7,000 documented rare diseases, which it claims affect one in twenty patients in India, based on data. At the announcement of the event, the founder of the organisation, Prasanna Shirol, pointed out that a lack of government support and delayed diagnosis are the main challenges patients suffering from rare diseases face, with it taking up to seven years to get a diagnosis in some cases.
- In 2017, the government submitted a policy for rare diseases to the Delhi High Court, recommending ₹100 crore to be set aside for them, with the corpus split 60:40 between Central and State Governments. This, Shirol says, makes it even more important for awareness to be raised at this juncture.
- Dr. Meenakshi Bhat of the Centre for Genetics, Bengaluru, pointed out that the establishment attempts to provide testing for such conditions, which can be prohibitively expensive, to people below the poverty line free of cost.
- The Race for 7 will be held in Bengaluru and Mumbai on February 25. In Bengaluru, it will be flagged off at St. Joseph’s Indian High School at 6.30 am. To register, visit: www.registration.racefor7.com.
Baheti, who is used to travelling a lot for business purposes, says navigating public spaces is a challenge. “If you look at the front of my shoes, they are in bad shape because I bump into objects like steps. At airports also, I have difficulty finding gates and so on, but with a little adaptation and time I am getting better. I still miss trains and flights but eight out of ten times I make it, and that is not something I want to give up on.”
From his travels, Baheti surmises that introduction of accessible design into technology and public spaces can go a long way towards helping people like him. “I have been fortunate to have the resources to seek the right help and the tools to aid me, but there is a lot that society can do. Small design changes are all it takes — a ramp for wheelchairs, voice announcements in lifts for the visually challenged, accessibility options on websites — I have difficulty using major e-commerce and travel booking websites because they don’t have separate options for people like me, and it is not because they don’t have the resources. Such changes will help people with conditions be more independent.”
He believes that a regulatory push for design that aids basic accessibility would go a long way towards making society more inclusive. And to this end, he is attempting to raise awareness about rare diseases like his own. As a long distance runner, he ran the Boston Marathon with the aid of guides last year to raise funds, and also ran the Delhi half marathon to raise money and awareness for the Cricket Association for the Blind. He also works with the Centre for Eye Genetics and Research (CEGR), one of the agencies under the Organisation for Rare Diseases India (ORDI) to help further research on visual ailments and possible solutions, which include introducing school students to accessibility tools to help them stay in school.
Baheti’s core philosophy is one of inclusivity. “Everyone is unique in their own way, and all it takes is to put a little thought into things to create a world that is more inclusive for everyone.”