Reporting From India: Attending a National Conference on Rare Diseases, Vijayawada, India.

By Aditi Kantipuly

I recently had an opportunity to attend the a national conference in India, on raising awareness for rare genetic conditions, in Vijayawada India, organized by IORD (otherwise commonly known as Indian Organization for Rare Diseases). For this month’s post, I wanted to share a story of a brother and sister diagnosed with Friedreich’s ataxia.

Friedreich’s ataxia Ataxia (FA) is characterized by progressive muscle loss and coordination. While they may physically experience the similar symptoms, what truly unites them is their ability to look past their diagnosis, and not let it define them as individuals. Despite their limited physical abilities, both Chandu and Vijaya are productive members of society; they help shape future generations of tomorrow through teaching and inspire their students, by personifying resilience.

Additionally, the sibling-pair duo play an active role in health advocacy, and offer support for newly diagnosed patients. When individuals are first diagnosed with FA, it is often a confusing time for them especially in a country like India.

Individuals with disabilities in India are subject to stigmatization.  Many people in India believe that those born with disabilities are paying their “karmic debt” forward. As such, it is common for families to shy away from accessing treatment, because of feelings like shame and guilt. The underdeveloped infrastructure across much of India, combined with the bumper-to bumper traffic, along with uneven payments, makes reaching commonly accessible places such as the neighborhood grocery store, a paramount task.

Thus, rare disease support groups can be especially valuable in a country such as India, because it allows one to connect with others facing the similar challenges. Fortunately, both Chandu and Vijaya have founded (SAMAG), a Friedreich’s ataxia patient advocacy group, and are also active members of Friedreich’s Ataxia India Organization, where they share their candid experiences with other newly diagnosed patients offering practical advice instilled with hope.