What Is It Like To Be A Rare Disease Caregiver In India? | Health Wealth, Ep 14

How far would you go to save the life of a loved one? All caregivers have a tremendous responsibility towards the wellbeing of a patient. But in some rare cases, caregivers have to battle against immense odds to find hope and treatment. India has around 450 rare diseases. Data shows that 50% of these diseases happen in children below the age of one and many don't survive. Today is World Hypophosphatasia Day, a day to spread awareness on one rare disease--hypophosphatasia. This is a genetic condition where the body cannot absorb calcium leading to bones not being able to develop. There is only one Indian who has it (Sera) and we hear about the difficult journey of this one-year-old from her father Michael. Not everyone has the privilege of good health. Sera has medicine to last her till November 2023, after which, her body will reject calcium and stop growing. What this episode gives us is an understanding of where caregivers can draw resilience and courage.  ***Featuring Michael Andrews, a rare disease caregiver Listen in! Produced by Anna Priyadarshini Sound Mix by Sachin Dwivedi