Personal Voices

The text The Rare Disease Challenge More than you can imagine on a Blue and Green background and elements of zebra ribbon and rare disease day motif
Rare Disease Challenge: More Than You Can Imagine
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…
A little child flanked by her parents and the text overlay Our Daughter Had CHD. We did not give up
We Did Not Give Up In The Congenital Heart Disease Journey
When Pritisudha’s daughter Rudranshi was born with CHD (Congenital Heart Disease), a condition with the heart’s structure which is present at birth and which can affect the normal flow of blood through the heart, her world naturally crumbled. Two…
Pic of a young boy flanked by his parents in front of a camel in a desert. Text overlay Or son had his first major heart surgery at 8 months
My Son Had His First Major Heart Surgery At 8 Months
Vibha Dhoot, 39 from Jaipur shares the journey of her son who was born with major and multiple congenital heart defects and how the family overcame the many challenges, worked through multiple surgeries and complicated treatment protocols to give…
Thumbnail based on world cancer day theme United by Unique and the text How Cancer Shapes Lives and Perspectives
Cancer Turned My Life Upside Down
On World Cancer Day, our contributors shared how cancer has changed their perspective and outlook towards life, irrespective of whether it turned their lives upside down or not.  You can also read their detailed cancer journeys by clicking on…
Profile picture of a woman in a black jacket and orange shirt and the text overhead Cancer Turned My World Upside Down
Cancer Disrupted Everything But Taught Me Power of Hope
World Cancer Day announced the Upside Down Challenge. Anita Nanda reflects on how cancer has changed her forever. And what gives her hope and keeps her resilient. How has cancer turned your life upside down? Cancer diagnosis is a life changing event…
Picture of the author in the hills and the text overaly I trekked the himalayas one year after Ovarian Cancer Treatment
Mental Healing Is An Important Element Of Cancer Healing
Prajakta Paranjpe, 47, a Singapore resident, was diagnosed with ovarian cancer, with almost no symptoms. A surgery and six rounds of chemo later, she has been clear for a year, and has even gone trekking to the Himalayas. Read how she navigated her…
Picture of a young woman in a green dress and text toverlay Navigating Pulmonary Arterial Hypertension and Lung Transplant
Staying Strong through Pulmonary Arterial Hypertension and Lung Transplant
Karthika Ramachandran narrates her story of pain of living with Pulmonary Arterial Hypertension (PAH), and the strength and resilience that helped her manage the whole process of PAH treatment and lung transplant recovery. What started as a habit of…
Stock pic of an Indian woman and an inset of a stoma bag and text overlay Living well with a stoma bag
A Stoma Bag Should Not Stop You From Living Well
Binny*, a 57 year old woman from Mumbai shares her experience of living with a stoma bag after a diagnosis of Colorectal Cancer and the lifestyle changes she has to make to live life to the fullest. And practical and useful tips on travel, diet and…
Picture of Pragya Prasun Singh, an acid attack survivor and text overlay on blue strip Advocating for Acid Attack and Burn Survivors
True Inclusion And acceptance Still Escapes Acid Attack And Burn Survivors
Pragya Prasun Singh, 42 is an acid attack survivor, and it has taken multiple surgeries and immense support from her family to help her cope. Her organization Atijeevan Foundation focuses on comprehensive rehabilitation for burn victims and also…