My name is Kriti Pandey, and I am 26 years old. I live with Hereditary Angioedema (HAE) — a rare and often misunderstood disease. My journey has been full of struggles, but also of strength, learning, and hope.
My first symptoms began in 2018 after a routine medication triggered unusual swelling and reactions in my body. It took months of uncertainty, hospital visits, and repeated attacks before I finally received a diagnosis. In 2019, my life changed forever when I was officially told that I had HAE, confirmed by low C1 esterase inhibitor and C4 levels.
This diagnosis carried not just a medical burden but also an emotional one. I lost my mother in December 2020 to angioedema while we were on the way to seek treatment. Watching her suffer and knowing that I carried the same genetic condition was heartbreaking. My sister too has been affected, which makes this illness not only my personal journey but also a family story of resilience.
Over the years, I have faced swelling episodes, hives, skin allergies, and fear of the unknown. There have been days of anxiety, pain, and helplessness. Yet, in this journey, I found strength — in my family, in doctors like Dr. Ankur Jindal (Manipal Hospital, Bangalore) and Dr. Kaushik Mandal (SGPGI Lucknow), and in the patient community, especially HAE Bravehearts, who have guided me with knowledge and compassion.
Even though this disease has no permanent cure, I try to live a life of balance. I avoid triggers, follow healthy routines, and keep myself educated about treatment options like C1 inhibitor injections. I am also deeply thankful to the Government of India and ORDI for working towards making rare disease drugs more affordable and accessible by removing GST. This brings hope not just to me but to countless patients across the country.
My journey with HAE has taught me courage, empathy, and patience. I have also made the personal decision not to have children, as I do not want to pass this genetic condition to the next generation. Instead, I wish to focus on awareness, research, and supporting others who walk this difficult path.
To anyone reading this who might be struggling with a rare disease know that you are not alone. We may be few in number, but together we are strong. With medical science, community support, and government care, we can build a future where rare does not mean neglected.
“I may have HAE, but HAE does not have me. My story is not of illness but of resilience and hope”.
