By Sarada Lahangir
Angul/Bhubaneswar- Diagnosed with sickle cell disease at the age of one, 32-year-old Ashish Pradhan from Kalamachuin village of Talcher block of Anugul district lived a childhood where pain crises and hospital visits were the way of life. But Ashish did not let this condition define him. Instead, he became a committed advocate, providing education and support to individuals and families impacted by this condition.
Ashish inherited sickle cell disease from both his parents. His father, late Ashok Kumar Pradhan, knew he had the trait, but his mother was. When Ashish was a year old, he fell sick with swelling in joints of hishandsand legs, prompting his parents to take him to the hospital, where his condition was identified. Ashish learned about his disease in class VI. Over the first 15 years of his life, he frequently had pain crises and received 12 to 14 blood transfusions.
Growing Up in the Shadow of Sickle Cell
Growing up with sickle cell disease, Ashish felt isolated because he was unable to do the same things that others his age could, which was discouraging. He wanted to play cricket and other sports like his other friends, but he couldn’t; if he did, he would face a painful crisis the next day. So, Ashish could not participateeither in any of his school sports or in normal play.
His health condition also badly impacted his studies. Pain crisis is a common, painful complication of sickle cell disease. It happens when sickled cells build up in a blood vessel and cause a blockage. This blockage keeps oxygen-rich blood from reaching tissues and organs, and joints, resulting in painful symptoms.Ashish often described these episodes as a deep, throbbing ache, as if his bones were being crushed. Such crises required frequent hospitalizations, often for days together.
“Most of the time, I could not attend school because every month or two, I faced this crisis and had to be admitted to the hospital for days; as a result, I had to retake classes, which affected my results as well,” said Ashish.
“My classmates criticized me for my absences in the class, and many teachers also felt that I was using my illness as an excuse to skip classes. Children in my school started calling me ‘patient,’ which hurt me.” Ashish recalled his childhood.
Beyond the physical pain, Ashish silently carried the sting of social isolation because his classmates and some of his teacherswere unaware of the silent battle he waged. This experience gave him the motivation to dismantle such misconceptions for others.
Despite facing these challenges, Ashish achieved a first division in the 10th board exam, scoring over 74.8%.
The emotional impact of SCD
Ashish’s mother, Sushama Pradhan, recalled the difficult early days, saying that when they first found out about his sickle cell, it felt like they were completely broken. But she continued, her voice softening, “We knew we had to be strong for Ashish, to help him have as normal a childhood as possible. You know, a mother dies every moment when she sees her child in pain. My situation was like that many times. However, Ashish was truly a cooperative boy. He always listened to the doctors. He wasn’t even allowed to have spicy, oily food, but he never once asked for it, even as a little kid. So, we just stopped cooking those things at home, too, for him.”
She added that these difficulties lasted until he was around 15 years old. Thankfully, she noted, the hydroxyurea medication received from the MCL hospital, Talcher made a real difference, and his pain episodes became much less frequent.Hydroxyurea is an oral medication available in every district headquarter hospital, PHC, CHC, and Ayushman Arogya Mandirthat has become a cornerstone in the management of sickle cell disease and is known to reduce pain crises, decreases hospitalization and the need for blood transfusions.
So, what was all of this like for Ashish growing up? It was, in a word, stressful. Ashish said he felt like he was a huge burden on his family. “I learned from my parents that after knowing my health condition, they did not plan for a second baby. My mother quit her government job to take care of me. My father worked at MCL (Mahanadi Coalfield), so my mother devoted her time to me. My parents could not attend most of our family functions due to my health,” he stated. “They have sacrificed many things because of me. I have seen many of their sleepless nights taking care of me and worrying about me,” he shared with a heavy heart.
From Personal Journey to Community Catalyst
After facing numerous health challenges caused by sickle cell disease (SCD), Ashish was keen to learn more about the condition and its management. In 2017, he attended the Global Sickle Cell Congress held in Bhubaneswar — a turning point in his life. He met manysickle cell patients and connected with some doctors there.His interest in knowing more pushed him to visit places like Vellore and Kerala, meet these doctors, and try to learn more about the disease. He began attending workshops and seminars on SCD organised by the health department, Govt of Odisha. He found that most of the patients know little about this disease, and there was little awareness about it. “When I see their plight, I strongly feel the need for a support group, so I decided to help make people aware of this disease. I have created a WhatsApp group where about 60 people with sickle cell disease are members. We stay connected through this group and help and give moral to support each other,” Ashish said.
Through shared experiences, the group has fostered a powerful sense of community. It transforms individual struggles into collective solutions, such as pooling knowledge to find specialists or helping members cope with the emotional toll of chronic illness.
His efforts are further strengthened by broader initiatives like the National Sickle Cell Elimination Mission, launched by the Government of India to eradicate the disease by 2047.
UNICEF plays a vital role in supporting the sickle cell programme in Odisha, particularly in line with India’s 2047 goal to eradicate the illness. In collaboration with the National Health Mission, Odisha and the health department, UNICEF supported trainings on sickle cell testing, treatment, counselling and awareness. UNICEF created context-specific communication tools to debunk myths about sickle cell illness, to support the state communication programmes. UNICEF worked to create a patient collective and a voice for sickle cell patients.
While the government’s support in facilitating workshops was invaluable, securing policy-level changes proved a slow and challenging process, often requiring persistent follow-ups and data-backed appeals.
“The general perception of people even today is that if one suffers from sickle cell disease, their life will be cut short. But it is not so. If managed well, one can live a full life with this disease. It’s your body. Sickle cell disease doesn’t control you. You control sickle cell disease.” Ashish said firmly.
“I feel proud of him as he is now supporting many like him,” said his mother.
Today, Ashish works with the Mahanadi Coalfield (MCL) as an assistant manager in the forest and environment division. His mission goes far beyond his professional responsibilities. He remains an active advocate, spreading awareness among those living with sickle cell disease, ensuring that as many people as possible understand that having sickle cell disease doesn’t signify the end of your life or that living with it is not a life with limitations, but that one can live life fully and purposefully if they choose.
