Ashutosh Sharma (India): Advocating for haemophilia care closer to home
Accessing care and treatment was a challenge when I was growing up in Jind, Haryana. I started showing symptoms of haemophilia when I was nine months old but didn’t get a diagnosis until I travelled to Delhi at the age of 16, shortly after my first brain bleed. My family eventually decided to move to Delhi permanently so that we could be closer to care.
At the time when I was diagnosed, treatment was very expensive and my father had to sell his land so that we could afford to stop the bleeding in my brain. I was determined to live as normal a life as possible. I completed my education and started a business in Delhi. In 2005 I married Jyoti and we went on to have two daughters.
Throughout all these achievements I experienced many bleeding episodes, including two more brain bleeds. By this time, we had moved back to Jind and I became determined to ensure others living with haemophilia would not go through the same challenges as my family.
Together with the haemophilia community in the district, we engaged with the healthcare authorities, which led to factor treatment becoming available in our district hospitals. We established a Hemophilia Society Chapter in Jind in 2017, and, with the support of the World Federation of Hemophilia and Hemophilia Federation India, we now have a more regular supply of treatment in our local Haemophilia Treatment Centre, providing relief to many families like mine.
Ashutosh Sharma, shared his story with us as part of our ‘Get+involved: share your story’ series to celebrate World Haemophilia Day 2020.