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>

Climbing the job ladder with a chronic rare illness

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 dream of education because of challenges that able bodied people cannot even think of. In this episode, a 45-year-old woman from Chennai - Sujatha - offers insight on how she was forced to power through discrimination and a chronic illness to realise her dreams. She has Pseudoachondroplasia, an extremely rare form of dwarfism. She is also an MPhil.

<p dir="ltr">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.</p>
<p dir="ltr">Often people with rare diseases have to give up on the dream of education because of challenges that able bodied people cannot even think of. In this episode, a 45-year-old woman from Chennai - Sujatha - offers insight on how she was forced to power through discrimination and a chronic illness to realise her dreams. She has Pseudoachondroplasia, an extremely rare form of dwarfism. She is also an MPhil.</p>

Learning the hard way 

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 country such as Mumbai and Bengaluru, the children were getting an assured blood supply for their needs. Some non-profits who worked with these children, were organising blood donation camps regularly to ensure good supply for those who need blood transfusion.

But since the COVID-19 pandemic began, this system has gone for the toss. The large blood donation camps have stopped completely. The non-profits are now struggling to get donors. This has played havoc in the lives of these children.

In this episode of Rare Lives, senior reporter, Menaka Rao speaks with Vinay Shetty from THINK foundation in Mumbai, Rajat Agarwal from Sankalp foundation in Bengaluru and Atul Gera from Ranchi. These activists are trying hard to keep the blood supply in their cities going. We also speak with a 13-year thalassemia patient, Ira Sukheja and a Rajshekhar, parent of a 9-year old thalassemia patient, Rajeshwari.

<p>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 country such as Mumbai and Bengaluru, the children were getting an assured blood supply for their needs. Some non-profits who worked with these children, were organising blood donation camps regularly to ensure good supply for those who need blood transfusion.</p>
<p>But since the COVID-19 pandemic began, this system has gone for the toss. The large blood donation camps have stopped completely. The non-profits are now struggling to get donors. This has played havoc in the lives of these children.</p>
<p>In this episode of Rare Lives, senior reporter, Menaka Rao speaks with Vinay Shetty from&nbsp;<a href="http://www.thinkfoundation.org/index.php">THINK foundation</a>&nbsp;in Mumbai, Rajat Agarwal from&nbsp;<a href="http://www.sankalpindia.net/">Sankalp foundation</a>&nbsp;in Bengaluru and Atul Gera from Ranchi. These activists are trying hard to keep the blood supply in their cities going. We also speak with a 13-year thalassemia patient, Ira Sukheja and a Rajshekhar, parent of a 9-year old thalassemia patient, Rajeshwari.</p>

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

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 ugly head. While the pandemic has thrown up serious uncertainties, it has also led to greater recognition of valuing each moment that life has to offer. Gratitude is an emotional coping tool that rare individuals employ most of the time.

In this episode, Arouba Kabir, a practising therapist at Enso Wellness and a rare individual who has Cystic Fibrosis, discusses her life journey, and how she has seen rare individuals coping against massive odds. This episode thus delves into the hidden emotional costs of being rare.  

<p dir="ltr">Over the years, the importance of taking care of one&rsquo;s mental health has gained more acceptance. In 2020, with the breakdown of more traditional and physical forms of communication, social isolation reared its ugly head. While the pandemic has thrown up serious uncertainties, it has also led to greater recognition of valuing each moment that life has to offer. Gratitude is an emotional coping tool that rare individuals employ most of the time.</p>
<p dir="ltr">In this episode,&nbsp;<a href="https://twitter.com/Aroubakabir">Arouba Kabir</a>, a practising therapist at&nbsp;<a href="https://www.ensowellness.in/">Enso Wellness</a>&nbsp;and a rare individual who has Cystic Fibrosis, discusses her life journey, and how she has seen rare individuals coping against massive odds. This episode thus delves into the hidden emotional costs of being rare.&nbsp;&nbsp;</p>

Breaking free from the emotional costs of a rare disease 

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 individuals and persons with disabilities – have needs that are different from the larger population. 

From lifesaving medicines not reaching people due to the country-wide lockdown to lack of proper knowledge on how they can prevent the Coronavirus infection, this episode features difficult experiences. It focuses on the interview of Smitha Sadasivan, a disability rights advocate and a person with a rare illness called Multiple Sclerosis. She talks about the Indian public system proving fragile in the pandemic, and the consequent impact of this on rare individuals.

<div>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 individuals and persons with disabilities – have needs that are different from the larger population. <br><br>
</div><div>From lifesaving medicines not reaching people due to the country-wide lockdown to lack of proper knowledge on how they can prevent the Coronavirus infection, this episode features difficult experiences. It focuses on the interview of Smitha Sadasivan, a disability rights advocate and a person with a rare illness called Multiple Sclerosis. She talks about the Indian public system proving fragile in the pandemic, and the consequent impact of this on rare individuals.</div>

The pandemic unravels India’s weak disability support system

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 with an extremely rare genetic illness- 9P Deletion. While speaking fondly of the transformatory impact her daughter has brought in her life, she also voices concern due to major differences between America’s healthcare system (where Amelia was born) and India’s, their homeland, in accessing medical care. She discusses these challenges, and obstacles which the young family has had to face during the COVID-19 pandemic.

This episode delves into the choices that almost all parents of children with rare diseases have to commonly make, such as deciding on medical treatment and sending their children to school. 

Transcript Download

<div>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 with an extremely rare genetic illness- 9P Deletion. While speaking fondly of the transformatory impact her daughter has brought in her life, she also voices concern due to major differences between America’s healthcare system (where Amelia was born) and India’s, their homeland, in accessing medical care. She discusses these challenges, and obstacles which the young family has had to face during the COVID-19 pandemic.<br><br>
</div><div>This episode delves into the choices that almost all parents of children with rare diseases have to commonly make, such as deciding on medical treatment and sending their children to school. <br><br>
</div><div>
<strong>Transcript </strong><a href="https://www.sunoindia.in/wp-content/uploads/2020/10/Parenting-a-rare-child-Rare-Lives.pdf"><strong>Download</strong></a>
</div>

Parenting a rare child

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 illnesses is possibly the first such reported case in the world.

This episode features the interviews of Dr Priyanshu Mathur, a pediatrician at the JK Lone hospital, who treated the baby, and another parent in Uttar Pradesh whose children have been diagnosed with Spinal Muscular Atrophy.

The episode delves into why correct diagnosis of rare diseases is so important, and how diagnosis and timely treatment are hard to secure for parents.

<div>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 illnesses is possibly the first such reported case in the world.<br><br>This episode features the interviews of Dr Priyanshu Mathur, a pediatrician at the JK Lone hospital, who treated the baby, and another parent in Uttar Pradesh whose children have been diagnosed with Spinal Muscular Atrophy.<br><br>The episode delves into why correct diagnosis of rare diseases is so important, and how diagnosis and timely treatment are hard to secure for parents.</div>

Why it is not easy to diagnose a rare disease

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>

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

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

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