Normalizing Conversations to Eliminate Stigma Against Sickle Cell Disease: Doctors | Bengaluru News

Bengaluru: For nearly a decade, a girl with sickle cell disease was taken to hospitals only during traumatic emergencies while her family avoided regular treatment for the inherited condition. By the time she consulted a specialist at age 10, delayed care had left her with a massively enlarged spleen, severe pain, and gallstones, eventually requiring surgery to remove her spleen and gallbladder. Today, at 21, as her family searches for a groom, the same stigma has resurfaced in the form of a new dilemma — whether to disclose her diagnosis to her potential in-laws.Doctors say this condition is by no means isolated, and reflects the deep-rooted stigma surrounding this hereditary blood disorder. Fear of judgment often prevents families from disclosing the diagnosis or seeking regular treatment, leading to avoidable complications.Dr Vijay Kumar Srinivasalu, Senior Consultant Medical Oncologist at Sakra Global Hospital, said: “Studies conducted in India indicate that approximately one in four patients and almost half of their caregivers experience significant stigma related to this condition. This stigma extends beyond the medical aspects of the disease and affects the social, educational and familial spheres.”The word ‘jini’ itself carries a social burden in India. Families often fear being labeled as having “something wrong with their genes,” making them reluctant to discuss the condition or seek ongoing care. “This situation is very different from conditions like diabetes or high blood pressure, where people openly discuss family history of the disease,” said Dr Rasmi Balasiri, consultant in the medical oncology department at Ramaiah Memorial Hospital.Another reason for stigma is the visible physical changes that may develop as the disease progresses. She added that some children may have a prominent forehead and cheekbones, a relatively smaller lower jaw, prominent upper teeth, persistent jaundice, and short stature. She added: “Because of this stigma, some families avoid bringing their children for regular follow-up visits and only seek care in emergency situations, which deprives them of the continuity of treatment this disease requires.”Doctors say stigma also has a huge emotional impact, especially on children who don’t fully understand their illness. “In school-going children, teachers may not be fully informed, so fatigue, pain attacks or absenteeism are misunderstood as laziness,” said Dr Vishaka Panicker, associate consultant in medical oncology, Sparsh Hospital, RR Nagar. She added that open communication, age-appropriate counseling and family support can help children feel safe and accepted.Teenagers face a greater psychological burden. She added: “They are more aware of social judgement, body image, school performance, future friendships and relationships. They may hide pain, avoid taking medications in front of friends, or feel embarrassed by hospital visits. Many also worry about their marriage and career prospects, causing them to withdraw emotionally.”Concerns about marriage and motherhood continue to drive secrecy around the disease. Dr. Balasri pointed out that if a person with this disease marries a person who is a carrier, there is a risk that his children will inherit the disease. She also noted that many patients take hydroxyurea long-term, which has implications during pregnancy and requires careful planning and monitoring.Doctors have called for increased public awareness, genetic counseling, early carrier screening, and efforts to normalize conversations about SCD to eliminate stigma.Inset: What is sickle cell disease?Sickle cell disease is a group of inherited blood disorders caused by an abnormal form of hemoglobin, the protein in red blood cells that carries oxygen. Abnormal hemoglobin causes red blood cells to become hard, sticky, and sickle- or crescent-shaped, leading to blocked blood flow, severe pain, anemia, and damage to multiple organs over time.