Two Warriors Leading Sickle Cell Awareness in India
Sickle Cell Disease (SCD) can generally be perceived as a distant health issue, discussed mostly through statistics or policies. But behind every number is a human story - of disrupted childhoods, overwhelmed families, and daily fights that go unnoticed. At the 2025 National Sickle Cell Summit, two young individuals, Lalit Kishor Pargi from Rajasthan and Swati Panika from Madhya Pradesh, offered something far stronger than data - their lived experience. Their accounts represent change, not just survival. In sharing their stories, they are helping to transform the way Sickle Cell and other similar inherited disorders are viewed in India.
Lalit Kishor Pargi: From Late Diagnosis to Leading the Way
Diagnosis and Early Life
Lalit Kishor Pargi first heard the term Sickle Cell Disease when he was sixteen years old. Until then, his life had been marked by uncertainty and pain. “The first 16 years were very painful,” he said during the National Sickle Cell Summit. He experienced repeated illness, fever, jaundice, anaemia, and persistent fatigue, but the cause remained unknown for years.
When the diagnosis finally came, it didn’t bring immediate clarity, only more questions. He shared that they didn’t even know how to manage it at that point. For him and his family, the emotional and physical toll of SCD was constant, and coping meant holding each other up through fear, hospital visits, and exhaustion. “My parents learned everything they could, and my siblings became my quiet cheerleaders,” he shared.
Turning Point and Advocacy
Everything changed for Lalit in 2021. After being diagnosed with COVID-19, he was admitted to the ICU multiple times, with dangerously low oxygen levels and serious complications. He recalls lying in a hospital bed after being on a ventilator, thinking not just about his survival but about the families who might never be able to afford such care. “I come from a tribal community, and I know the conditions our people live in,” he said. “If they had a child like me, how would they save him?”
That reflection led him to action. From his hospital bed, he made a decision: to work for sickle cell patients who didn’t have access or awareness. He began researching and found NASCO’s Udaan series on YouTube. Inspired, he reached out to Gautam Dongre, General Secretary of NASCO, and from there, found a like-minded community.
Recognising the lack of awareness in his home state of Rajasthan, Lalit launched the Sickle Cell Saksham Rajasthan Foundation, a patient-parent initiative focused on education, diagnosis, and support. He began creating awareness with guidance from NASCO and started actively identifying patients, driven by the clear gap in public knowledge about sickle cell in the region.
Impact and Vision Ahead
During an early awareness drive, Lalit distributed pamphlets outlining SCD symptoms. One newly married woman recognised her own experience in the descriptions and was later diagnosed with the condition. Moments like these reaffirm his mission, even as deep-rooted challenges persist, from social stigma to inadequate diagnosis and care, particularly in rural and tribal areas.
Lalit envisions a future with universal early screening, reliable treatment, and emotional support for every warrior and their families. He’s especially focused on counselling to combat the misinformation and silence surrounding the disease. “I’ve lived through countless crises, but I didn’t give up. I fought through it all and became a warrior,” he says. “Now, I want to be a voice for others, so they don’t have to suffer in silence like I once did.”
Swati Panika: Choosing to Be a Warrior
Diagnosis and Early Struggles
Swati Panika was nine years old when she was diagnosed with Sickle Cell Disease (SCD). Before that, her life was a blur of unexplained symptoms — jaundice, pain crises, and repeated hospital visits. “I didn’t understand what sickle cell disease meant. I just kept wondering, ‘Why me?’ Why was I always sick, and why did I have to endure so much pain?”
Her family was deeply concerned but didn’t fully understand how to manage her condition. In the early years after diagnosis, they followed whatever treatment was prescribed, often without clear guidance. It wasn’t until Swati turned 18 and was introduced to hydroxyurea that things began to improve. She attributes her better health since then in part to the government’s support in providing access to this essential medication.
Even with treatment, the impact of the disease bled into daily life. Attending school regularly was a challenge. “Attendance was always a burden, and even carrying a heavy school bag felt impossible during crises. Many teachers didn’t understand, and if I couldn’t meet attendance requirements, I wasn’t allowed to sit for exams.”
Mental Health, Stigma, and Advocacy
Living with a chronic illness took a toll on Swati, not just physically, but emotionally. The repeated hospitalisations, missed school, and the feeling of being dependent on others weighed heavily on her. During a particularly difficult pain crisis just before an exam, she hit an emotional low. “I felt completely broken,” she says. “But I realised there were so many like me who needed emotional support.”
That moment became a turning point. Swati decided to speak up. She launched her Instagram page, @girl.with.sicklecell, followed by a YouTube channel, and began sharing her story publicly. This eventually led her to connect with NASCO, where she found a wider community and platform to advocate for others living with SCD.
Today, she works to raise awareness around how SCD is perceived in educational and professional settings. From pushing for structured awareness programmes in schools and offices to calling for mental health support, Swati believes understanding and early intervention can shift lives. She also highlights the need for dedicated counselling at the time of diagnosis, especially for young patients and their families.
Looking Ahead: Equity, Not Sympathy
Despite improved access to medication through the Sickle Cell Elimination Mission, Swati says critical gaps remain — from unavailable blood and platelets to difficulty getting hospital beds. She now advocates for job reservations, flexible sick leave, and dedicated sickle cell centres in high-prevalence districts. “Sometimes, warriors don’t even know that medicines or genetic counselling exist, or they aren’t available. With your support, it can get better.”
Swati has also confronted the stigma around marriage, having seen many warriors face harsh judgments. She believes that education, openness, and family support can shift these attitudes. At the heart of her resilience is her mother, a single parent who stood by her through every crisis. “She was protective about my health. She even hesitated to let me study out of town, fearing how I’d manage a pain crisis alone.” That foundation of love and care is what fuels Swati’s message today. “I refuse to be a victim. Instead, I choose to be a warrior.”
Shared Realities and Systemic Gaps
Though Lalit and Swati come from different regions, their journeys reflect similar challenges — late diagnosis, prolonged uncertainty, and a fight for stability. Both found strength in community and now advocate for structured counselling, flexible education, job policies, and routine premarital genetic screening. Above all, they urge society to stop viewing Sickle Cell Disease as taboo. Their work on the ground shows that true progress lies in listening, not just in policy rooms, but in homes, schools, and workplaces.
Listening to Warriors, Not Just Data
India’s mission to eliminate SCD by 2047 will depend on more than screenings and policies. It will require listening—truly listening—to those who’ve lived the reality. Lalit and Swati are showing what’s possible when survivors are given a voice, a platform, and a little support.
Their stories don’t just raise awareness. They reshape the narrative. From confusion to clarity, from silence to advocacy—they are turning pain into purpose. And in doing so, they’re helping others walk a little more confidently in their journey with SCD.