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065: Dr. Shyamala Peesapati is an advocate for patients with rare forms of cancer | The Rare World
Dr. Shyamala Peesapati of Bangalore, India is a dentist by trade, but devotes a great deal of energy to helping those with rare diseases. On the day she turned 21, her father was diagnosed with granulomatosis with polyangiitis. He died in 2019. Shyamala was unaware of patient advocacy and didn’t know about social media; but she quickly learned of both.
After learning of her father’s diagnosis, she was dismayed to realize that for those with rare diseases, in India there was little or nothing in the way of doctors trained to treat such diseases. She also found it was difficult to locate like-minded people who knew others who had been diagnosed with granulomatosis with polyangiitis. That’s when Shyamala put social media to use, and became a fierce, tireless advocate for those diagnosed with rare diseases.
A lack of specialists with knowledge of her father’s disease resulted being misdiagnosed as a form of lung cancer. Part of this stemmed from a lack of access to health care, and not knowing which doctor could best provide care for her father.
One day when she had nothing better to do, Shyamala went on Instagram and wrote about rare diseases. She saw some people liked her post, she continued to write on the subject, and that turned her into an advocate. Shyamala began receiving responses from all over the world. This led to the creation of her website, The Rare World.
Dr. Shyamala Peesapati hopes her website will inspire those with rare diseases, rare cancers, to speak up. That way they can connect with patients and loved ones diagnosed with the same disease when because of the diagnosis or where they live, have a difficult time finding doctors familiar with the diagnosis or people they can talk to as a means of support.
Shyamala says those who visit her website can expect support, plus knowledge and motivation.
Additional Resources:
Support Groups:
The Rare World: https://www.therareworldofficial.com
McGill University Rare Disease Interest Group: https://www.raredigmcgill.com
Vasculitis Foundation: https://www.vasculitisfoundation.org
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By Jim Foster
5
22 ratings
Dr. Shyamala Peesapati of Bangalore, India is a dentist by trade, but devotes a great deal of energy to helping those with rare diseases. On the day she turned 21, her father was diagnosed with granulomatosis with polyangiitis. He died in 2019. Shyamala was unaware of patient advocacy and didn’t know about social media; but she quickly learned of both.
After learning of her father’s diagnosis, she was dismayed to realize that for those with rare diseases, in India there was little or nothing in the way of doctors trained to treat such diseases. She also found it was difficult to locate like-minded people who knew others who had been diagnosed with granulomatosis with polyangiitis. That’s when Shyamala put social media to use, and became a fierce, tireless advocate for those diagnosed with rare diseases.
A lack of specialists with knowledge of her father’s disease resulted being misdiagnosed as a form of lung cancer. Part of this stemmed from a lack of access to health care, and not knowing which doctor could best provide care for her father.
One day when she had nothing better to do, Shyamala went on Instagram and wrote about rare diseases. She saw some people liked her post, she continued to write on the subject, and that turned her into an advocate. Shyamala began receiving responses from all over the world. This led to the creation of her website, The Rare World.
Dr. Shyamala Peesapati hopes her website will inspire those with rare diseases, rare cancers, to speak up. That way they can connect with patients and loved ones diagnosed with the same disease when because of the diagnosis or where they live, have a difficult time finding doctors familiar with the diagnosis or people they can talk to as a means of support.
Shyamala says those who visit her website can expect support, plus knowledge and motivation.
Additional Resources:
Support Groups:
The Rare World: https://www.therareworldofficial.com
McGill University Rare Disease Interest Group: https://www.raredigmcgill.com
Vasculitis Foundation: https://www.vasculitisfoundation.org