Rare Lives

Suno India

There are more than 7,000 documented rare conditions in the world. While there is no known cure for some conditions, where there is a cure (or maintenance through medicines is possible), the cost of medication is exponentially high to bear. This podcast will focus on the status of rare conditions in India, which has been talked about very little in Indian society. It will be a one-of-its-kind attempt in India to document the gamut of challenges and achievements of people with rare conditions and will open a constructive dialogue on what can be done. This is important because an estimated 1 in 20 Indians are affected by a rare disease. The series will bring out the human face behind rare conditions – the patients, the families, caregivers, doctors, activists and geneticists working to improve life for people with rare conditions.

Mar 24, 2021

Advocating for a rare cause

This episode features a parent who has lost three infant children to a rare illness linked to inborn errors of metabolism caused by enzyme deficiency. Vikas Bhatia’s ordeal turned him from an ordinary parent...

22 mins

Mar 01, 2021

What does a rare family look like?

The life of a rare individual's parent is unlike anybody else’s. Mostly, parents are their children’s primary caregivers till late in the child’s life, and it is likely that they do not have qualified support....

26 mins

Feb 14, 2021

Climbing the job ladder with a chronic rare illness

Adulthood is when one should be able to live independently; when one can earn a living and become self-sufficient. But, should a rare individual have a disability, the severity of the disability can determine w...

18 mins

Jan 15, 2021

Learning the hard way

Education is the foundation on which a person can build their life. But for rare individuals, being able to go to school or college is not a guarantee. Often people with rare diseases have to give up on the dr...

21 mins

Dec 31, 2020

Quest for blood- How COVID-19 pandemic hurt children with thalassaemia

Thalassaemia is a rare blood disorder which causes the blood to have less haemoglobin. Children suffering from thalassemia need regular blood transfusions- once every fortnight to 20 days. In some cities of the...

25 mins

Dec 24, 2020

Breaking free from the emotional costs of a rare disease

Over the years, the importance of taking care of one’s mental health has gained more acceptance. In 2020, with the breakdown of more traditional and physical forms of communication, social isolation reared its...

24 mins

Nov 25, 2020

The pandemic unravels India’s weak disability support system

Persons with disabilities make up over 2 percent of the Indian population. While not all persons with disabilities are rare individuals, rare diseases are chronic and can lead to major disability. Both – rare i...

25 mins

Oct 22, 2020

Parenting a rare child

Being rare is not a death sentence, and nobody can understand this better than a parent of a rare child. In this episode, host Avantika Shrivastava speaks with Tresa Joseph whose daughter has been diagnosed wit...

31 mins

Sep 29, 2020

Why it is not easy to diagnose a rare disease

In August, a 25-day-old baby boy was diagnosed with two severe rare diseases - Pompe and Spinal Muscular Atrophy- at the specialised rare disease centre of JK Lone Hospital in Rajasthan. A baby with two rare il...

20 mins

Sep 14, 2020

The impact of COVID-19 & lockdown on people with rare diseases

More than 1 million Indians have been taken ill by the COVID-19 virus, but what has been the human cost on an extremely vulnerable section of the country’s population – people living with rare disease? The firs...

15 mins