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 first episode of ‘1 in 20,000’ Season 2 – Rare Lives – delves on the pandemic and its impact. 

Hosted by Avantika Shrivastava, this episode features the experiences of Dr. Dipanjana Datta, a genetic counsellor and West Bengal coordinator for the Organisation of Rare Diseases in India, and Dr. Apurba Ghosh who is the Director of the Institute of Child Health in West Bengal. 

This season has been made possible from a grant by the Thakur Family Foundation.

<div>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 first episode of ‘1 in 20,000’ Season 2 – Rare Lives – delves on the pandemic and its impact. <br><br>
</div><div>Hosted by Avantika Shrivastava, this episode features the experiences of Dr. Dipanjana Datta, a genetic counsellor and West Bengal coordinator for the Organisation of Rare Diseases in India, and Dr. Apurba Ghosh who is the Director of the Institute of Child Health in West Bengal. <br><br>
</div><div>This season has been made possible from a grant by the Thakur Family Foundation.</div>

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.

Rare Lives

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.

<p>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.</p>
<p>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.</p>
<p>The series will bring out the human face behind rare conditions &ndash; the patients, the families, caregivers, doctors, activists and geneticists working to improve life for people with rare conditions.</p>

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

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 to an advocate of securing proper diagnosis and treatment. He and his wife- Poonam Bhatia – established the Metabolic Disorders and Rare Diseases Organization of India. They describe themselves as a parental support and advocacy organisation. 

What was his journey? Listen on. 

This season has been made possible from a grant by the Thakur Family Foundation.

<p dir="ltr">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.&nbsp;</p>
<p dir="ltr">Vikas Bhatia&rsquo;s ordeal turned him from an ordinary parent to an advocate of securing proper diagnosis and treatment. He and his wife- Poonam Bhatia &ndash; established the Metabolic Disorders and Rare Diseases Organization of India. They describe themselves as a parental support and advocacy organisation.&nbsp;</p>
<p dir="ltr">What was his journey? Listen on.&nbsp;</p>
<p dir="ltr">This season has been made possible from a grant by the&nbsp;<a href="https://www.thakur-foundation.org/">Thakur Family Foundation</a>.</p>

Advocating for a rare cause 

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. Parents thus have to juggle multiple priorities leading to hard decisions. For instance, whether to take up a job or not given the child’s needs? Should the family shift homes to seek treatment to ease the rare child’s life? These become significant questions. 

While each family is unique, this episode features Dr. Suhas Indurkar, the mother of 43-year-old Kedar Indurkar who has cerebral palsy because of which he has little physical strength in his body. She describes decades worth of experiences being part of a rare family, including her pursuit of a career in spite of the challenges, her support systems, and how Kedar was raised to be self-adequate.

<p dir="ltr">The life of a rare individual's parent is unlike anybody else&rsquo;s. Mostly, parents are their children&rsquo;s primary caregivers till late in the child&rsquo;s life, and it is likely that they do not have qualified support. Parents thus have to juggle multiple priorities leading to hard decisions. For instance, whether to take up a job or not given the child&rsquo;s needs? Should the family shift homes to seek treatment to ease the rare child&rsquo;s life? These become significant questions.&nbsp;</p>
<p dir="ltr">While each family is unique, this episode features Dr. Suhas Indurkar, the mother of 43-year-old Kedar Indurkar who has cerebral palsy because of which he has little physical strength in his body. She describes decades worth of experiences being part of a rare family, including her pursuit of a career in spite of the challenges, her support systems, and how Kedar was raised to be self-adequate.</p>

What does a rare family look like?

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 whether they can get and hold a job or start something of their own to become self-employed. 

This episode explores how two people with rare illnesses have coped. Kedar Indurkar is a 43-year-old with Cerebral Palsy and is a recipient of an award by the President of India for his work. Manav Goyal has facioscapulohumeral muscular dystrophy (FSHD). 

<p dir="ltr">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 whether they can get and hold a job or start something of their own to become self-employed.&nbsp;</p>
<p dir="ltr">This episode explores how two people with rare illnesses have coped. Kedar Indurkar is a 43-year-old with Cerebral Palsy and is a recipient of an award by the President of India for his work. Manav Goyal has facioscapulohumeral muscular dystrophy (FSHD).&nbsp;</p>

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

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