Doctors urge open dialogue to combat stigma of sickle cell disease

Normalise Conversations to Eradicate Stigma Around Sickle Cell Disease, Say Doctors

bengaluru Bengaluru: A decade-long struggle with sickle cell disease left a young girl facing severe complications due to delayed treatment, underscoring the damaging impact of stigma surrounding the inherited condition. Diagnosed at the age of 10 after years of receiving medical attention only during emergencies, she suffered from a massively enlarged spleen, severe pain, and gallstones. These complications ultimately necessitated the removal of her spleen and gallbladder.

Now 21 years old, the young woman and her family face a new challenge as they search for a prospective groom: whether or not to disclose her diagnosis. This dilemma highlights the pervasive stigma associated with sickle cell disease, which often deters families from seeking timely care or openly discussing the condition.

Medical experts emphasize that this stigma extends beyond health concerns, affecting various aspects of life, including social, educational, and familial relationships. “Studies from India suggest approximately one in four patients and nearly half of caregivers experience substantial stigma related to the condition,” said Dr Vijay Kumar Srinivasalu, senior consultant in medical oncology at Sakra World Hospital. He noted that in India, even the term "genetic" carries a social burden, as families fear being labeled as having flawed genes.

Unlike conditions such as diabetes or hypertension, which are openly discussed, families with sickle cell disease often avoid conversations about the disorder. Visible physical changes associated with the disease, such as a prominent forehead, cheekbones, a smaller lower jaw, protruding upper teeth, persistent jaundice, and short stature, further contribute to the stigma. These factors discourage families from maintaining regular follow-up visits, leading to gaps in the continuity of care.

The stigma also takes a heavy emotional toll, particularly on children who struggle to comprehend their illness. Dr Vishakha Panicker, associate consultant in medical oncology at Sparsh Hospital, RR Nagar, explained that school-going children often face misunderstandings from teachers, who may interpret fatigue, pain episodes, or absenteeism as laziness. She stressed that open communication, age-appropriate counselling, and family support are essential to help children feel safe and accepted.

Adolescents face even greater psychological challenges, as they become more conscious of societal judgment, body image, academic performance, and relationships. Many hide their pain, avoid taking medication in front of peers, or feel embarrassed about hospital visits. Concerns about future marriage and career prospects can lead to emotional withdrawal.

Marriage and motherhood remain particularly sensitive topics for individuals with sickle cell disease. Dr Rasmi Palassery, consultant in medical oncology at Ramaiah Memorial Hospital, explained that if a person with the disease marries a carrier, there is a risk of passing the condition to their children. Additionally, long-term use of hydroxyurea, a common treatment for the disease, has implications during pregnancy, requiring careful planning and monitoring.

To address these challenges, doctors are advocating for increased public awareness, genetic counselling, early carrier screening, and efforts to normalise conversations about sickle cell disease. They believe these measures are crucial to reducing stigma and ensuring better care for patients.

Understanding 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 responsible for carrying oxygen. This abnormal haemoglobin causes red blood cells to become hard, sticky, and shaped like a sickle or crescent. These misshapen cells can block blood flow, leading to severe pain, anaemia, and long-term damage to multiple organs.