“I was 16 when I received my diagnosis, and life changed in a blink of an eye,” says Avantika Shrivastava. Avantika was diagnosed with a rare disease (which she chose not to disclose) in her early teens, after it was first ignored and brushed off as nothing more than the woes of a growing teenager.
Subsequently, she was misdiagnosed and struggled until another doctor made the connection between the symptoms she was exhibiting and the uncommon disease. Now 30, Avantika has started the podcast ‘1 in 20,000’, which she hosts, on Suno India to address the need for awareness surrounding rare diseases.
The podcast aims to dispel myths as well as create and spread awareness about the different rare diseases present. According to the Ministry of Health and Family Welfare, anywhere from 6,000 to 8,000 rare diseases are present, though 80 percent of those affected by a rare disease primarily suffer from one of 350 such diseases.
It has been estimated that around 96 million Indians suffer from a rare disease, but this is only based on the cases which are brought to the attention of doctors. The speculation is that there are many more people affected by these rare diseases, but several are not reported or are diagnosed incorrectly. While around 80 percent of these diseases tend to originate from a genetic defect or altercation, not all are. Some diseases which are found under the umbrella of rare diseases include muscular dystrophy, haemophilia, thalassemia and even certain autoimmune diseases.
“I mean, we don't come to know about them (rare diseases), do we? So, there's genetic work being done on rare diseases. Unfortunately, not a lot is being done in India but abroad, it is scaling up. And in India, there are social rights activists, lawyers, working specifically on rare diseases and disabilities and discrimination. So one podcast will be entirely on the legal rights of people with rare diseases or in general, people with disabilities as well. Then, another podcast will be of this extraordinary person who has built his life with a rare disease. He was perfectly normal, again, and in the course....now he's middle aged, but in the course of his life, he progressively deteriorated and unfortunately or fortunately, as he puts it, "this is what it is and it's not a bad thing as such,” Avantika says on the podcast.
Suno India will be releasing more podcasts as part of this series.
“Suno India as a podcast platform wants to bring to fore topics and issues that aren’t being discussed in mainstream media. As a medium, the podcast is a great way to tell the story without distractions and judgments. This topic is an important one that requires deliberations and dialogue, and we are happy to produce this,” said Padma Priya, Co-Founder and Editor of the platform.
You can listen to the podcast here.