Bengaluru: For nearly a decade, a girl with sickle cell disease was taken to hospitals only during painful emergencies while her family avoided regular treatment for the inherited condition. By the time she consulted a specialist at the age of 10, delayed care left her with a massively enlarged spleen, severe pain and gallstones, eventually requiring surgery to remove both 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 prospective in-laws.
The case is far from isolated and reflects the deep-rooted stigma surrounding this inherited blood disorder, doctors say. Fear of judgment often prevents families from disclosing the diagnosis or seeking regular treatment, leading to avoidable complications.
“Studies from India suggest approximately one in four patients and nearly half of caregivers experience substantial stigma related to the condition. This stigma extends beyond the medical aspects of the disease and affects social, educational and familial domains,” said Dr Vijay Kumar Srinivasalu, senior consultant, medical oncology, Sakra World Hospital.
The word “genetic” itself carries a social burden in India. Families often fear being labelled as having “something wrong in their genes,” making them reluctant to discuss the condition or seek continuous care. “This attitude is very different from conditions like diabetes or hypertension, where people openly discuss a family history of the disease,” said Dr Rasmi Palassery, consultant, department of medical oncology, Ramaiah Memorial Hospital.
Another reason for stigma is the visible physical changes that may develop as the disease progresses. Some children can develop a prominent forehead and cheekbones, a relatively smaller lower jaw, protruding upper teeth, persistent jaundice and short stature, she said. “Because of this stigma, some families avoid bringing children for regular follow-up visits and seek care only during emergencies, missing the continuity of treatment that this disease requires,” she added.
Doctors say stigma also takes a significant emotional toll, particularly on children who do not fully understand their illness. “In school-going children, teachers may not be fully informed, so fatigue, pain episodes or absenteeism are misconstrued as laziness,” said Dr Vishakha Panicker, associate consultant, medical oncology, Sparsh Hospital, RR Nagar. She added open communication, age-appropriate counselling and family support can help children feel safe and accepted.
Adolescents face an even greater psychological burden. “They are more aware of social judgment, body image, school performance, friendships and future relationships. They may hide pain, avoid taking medicines in front of friends or feel embarrassed about hospital visits. Many also worry about marriage and career prospects, causing them to be emotionally withdrawn,” she said.
Concerns around marriage and motherhood continue to drive secrecy around the disease. Dr Palassery pointed out that if a person with this disease marries someone who is a carrier, there is a risk that their children could inherit the condition. She also noted that many patients are on long-term hydroxyurea, which has implications during pregnancy and requires careful planning and monitoring.
Doctors have called for greater public awareness, genetic counselling, early carrier screening and efforts to normalise conversations around SCD to eradicate stigma.
What is Sickle Cell Disease?
Sickle cell disease is a group of inherited blood disorders caused by an abnormal form of haemoglobin, the protein in red blood cells that carries oxygen. The abnormal haemoglobin causes red blood cells to become hard, sticky and sickle- or crescent-shaped, leading to blocked blood flow, severe pain, anaemia and damage to multiple organs over time.
