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. 

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<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>
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<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>
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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.

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