Shefali*, 55 from Mumbai has lived with Relapsing-Remitting Multiple Sclerosis for 17 years. She shares her journey from diagnosis of MS to treatment and management, how she re-learnt basic skills in order to function effectively.
Please tell us a…
Anushree Risbood, 41 from Pune was diagnosed with Relapsing Remitting Multiple Sclerosis, and her life has not been the same since. She shares the details of her journey and how it has changed her perspective.
Please tell us about your present…
A root canal that would not stop bleeding, led to a diagnosis of Acute Myeloid Leukemia (AML). Amit Arvind Shenoy narrates his experience of navigating treatment of AML, the long term side effects and why he chose to be a patient advocate.
The…
Thangam Krishnan 87 years old from Bangalore, has been a home maker who was very involved in the lives of her family comprising her 3 kids and her husband. Until her mid 70s she had led a very independent life, passionate about cooking savouries and…
Preeti Phad’s journey with cancer began long before she truly understood what it meant. She was diagnosed almost 30 years ago with Retinoblastoma, a form of eye cancer, at 9 years of age. The condition eventually led to the removal of one eye and…
For World Book Day, we asked parents of children with difficult illnesses if they found reading to their children helpful or if they themselves found solace in books.
Suchismita Halder, mother of Ethan who has a rare condition Alagille Syndrome and…
Deepesh Palkar, 26 from Mumbai has struggled not only with Epilepsy, but the stigma attached to it, since childhood. He shares his journey to acceptance with us.
Please tell us about your present condition. Can you describe it?
I have undergone…
Rachana Vijan is a 66 year old breast cancer and heart failure survivor who chose to smile through it all. Here she shares her journey starting from early symptoms to the shocking diagnosis of heart failure and learning to proactively manage the…
Living with a rare disease presents itself with many challenges. Some are common across the rare diseases, but others are unique. Read on to find out what some of our contributors who are persons with lived experience of rare disease had to say on…
