Rare Lives Suno India

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.
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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.
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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). 
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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.
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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.
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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.  
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