Health and Me

Dr Manisha Madkaikar

World Sickle Cell Day 2026: Genetic Counselling Must Become Part of Every Sickle Cell Care Journey

<span>Sickle cell disease</span> (SCD) is one of India’s most pressing inherited blood disorders, with an estimated 1 in 86 births among tribal and disadvantaged groups affected. 

Despite advances in diagnostics and treatment, families continue to face uncertainty, stigma, and limited awareness.

<h2>Why <span rel="noindex">Genetic Counselling</span> Matters</h2><h2></h2>

A crucial distinction often overlooked is between sickle cell trait (SCT) and sickle cell disease. Carriers with one gene are usually healthy but can pass the trait to their children, while those with two defective genes live with lifelong complications. 

When both parents carry SCT, each child has a 50% chance of inheriting the trait and a 25% chance of developing the disease. This is why genetic counselling must be recognized as an integral part of the care continuum.

Genetic counselling provides clarity on inheritance patterns, transmission risks, and reproductive choices. In high-prevalence communities, it serves as a preventive strategy. Counselling is equally vital after diagnosis, guiding parents on managing complications, navigating education and employment, and preparing adolescents to understand their carrier status before marriage.

<strong>Also read: </strong><a href="https://www.healthandme.com/health-wellness/sickle-cell-disease-why-india-must-add-curative-treatment-to-meet-its-2047-elimination-goal-article-154672434" data-type="tilCustomLink">Sickle Cell Disease: Why India Must Add Curative Treatment to Meet Its 2047 Elimination Goal</a>

<h2>The Role of National Sickle Cell Anemia Elimination Mission</h2>

India’s <span>National Sickle Cell Anaemia Elimination Mission</span> (2023) prioritizes screening in high-burden states, with clear objectives: 

<ul><li>to provide affordable, accessible, and quality care to all SCD patients; </li><li>reduce prevalence through awareness campaigns and premarital genetic counselling; </li><li>conduct targeted screening and early detection using validated Point-of-Care Testing (POCT) kits; </li><li>ensure holistic management through primary, secondary, and tertiary healthcare facilities; </li><li>enable community involvement by linking patients with social security schemes. </li></ul>

Embedding counselling into primary healthcare ensures every positive test is followed by culturally sensitive, professional support.

<h2>Sickle Cell Disease: Tackling Stigma and Misconceptions</h2>

SCD is often misinterpreted as a curse or lifestyle issue, leading to stigma and blame. Such misconceptions not only deepen emotional distress but also delay timely medical intervention. Genetic counselling reframes the condition as a scientifically understood, inherited disorder, shifting the narrative from superstition to evidence-based care. 

By normalizing dialogue, it drives empathy-centered healthcare conversations and strengthens community resilience.

SCD is also often misinterpreted as a curse or lifestyle issue, leading to stigma and often blame. Such misconceptions not only deepen emotional distress but also delay timely medical intervention. 

Genetic counselling reframes the condition as a scientifically understood, inherited disorder, shifting the narrative from superstition to evidence-based care. By normalizing dialogue, it encourages empathy-driven healthcare conversations and strengthens community resilience.

<h2>Sickle Cell Disease: Why Genetic Counseling Is Important</h2>

Sickle cell care cannot stop at diagnosis; counselling must accompany patients across every life stage from childhood through adolescence, marriage, pregnancy, and adulthood. This continuity transforms care from reactive to proactive, ensuring families are never left alone in their journey. 

At the same time, awareness, education, and collaboration among clinicians, policymakers, patient groups, and communities are essential. Genetic counselling serves as the bridge between science and lived experience, enabling informed choices, reducing stigma, and promoting compassionate care that strengthens both families and the wider community.

<strong><em>(The author is Dr Manisha Madkaikar, Director - ICMR-National Institute for Research on Blood and Immune Disorders – Mumbai).</em></strong>

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Sickle cell disease (SCD) is one of India’s most pressing inherited blood disorders, with an estimated 1 in 86 births among tribal and disadvantaged groups affected. Despite advances in diagnostics and treatment, families continue to face uncertainty, stigma, and limited awareness.Why Genetic Counselling MattersA crucial distinction often overlooked is between sickle cell trait (SCT) and sickle cell disease. Carriers with one gene are usually healthy but can pass the trait to their children, while those with two defective genes live with lifelong complications. When both parents carry SCT, each child has a 50% chance of inheriting the trait and a 25% chance of developing the disease. This is why genetic counselling must be recognized as an integral part of the care continuum.Genetic counselling provides clarity on inheritance patterns, transmission risks, and reproductive choices. In high-prevalence communities, it serves as a preventive strategy. Counselling is equally vital after diagnosis, guiding parents on managing complications, navigating education and employment, and preparing adolescents to understand their carrier status before marriage.Also read: Sickle Cell Disease: Why India Must Add Curative Treatment to Meet Its 2047 Elimination GoalThe Role of National Sickle Cell Anemia Elimination MissionIndia’s National Sickle Cell Anaemia Elimination Mission (2023) prioritizes screening in high-burden states, with clear objectives: to provide affordable, accessible, and quality care to all SCD patients; reduce prevalence through awareness campaigns and premarital genetic counselling; conduct targeted screening and early detection using validated Point-of-Care Testing (POCT) kits; ensure holistic management through primary, secondary, and tertiary healthcare facilities; enable community involvement by linking patients with social security schemes. Embedding counselling into primary healthcare ensures every positive test is followed by culturally sensitive, professional support.Sickle Cell Disease: Tackling Stigma and MisconceptionsSCD is often misinterpreted as a curse or lifestyle issue, leading to stigma and blame. Such misconceptions not only deepen emotional distress but also delay timely medical intervention. Genetic counselling reframes the condition as a scientifically understood, inherited disorder, shifting the narrative from superstition to evidence-based care. By normalizing dialogue, it drives empathy-centered healthcare conversations and strengthens community resilience.SCD is also often misinterpreted as a curse or lifestyle issue, leading to stigma and often blame. Such misconceptions not only deepen emotional distress but also delay timely medical intervention. Genetic counselling reframes the condition as a scientifically understood, inherited disorder, shifting the narrative from superstition to evidence-based care. By normalizing dialogue, it encourages empathy-driven healthcare conversations and strengthens community resilience.Sickle Cell Disease: Why Genetic Counseling Is ImportantSickle cell care cannot stop at diagnosis; counselling must accompany patients across every life stage from childhood through adolescence, marriage, pregnancy, and adulthood. This continuity transforms care from reactive to proactive, ensuring families are never left alone in their journey. At the same time, awareness, education, and collaboration among clinicians, policymakers, patient groups, and communities are essential. Genetic counselling serves as the bridge between science and lived experience, enabling informed choices, reducing stigma, and promoting compassionate care that strengthens both families and the wider community.(The author is Dr Manisha Madkaikar, Director - ICMR-National Institute for Research on Blood and Immune Disorders – Mumbai).

world sickle cell day 2026: genetic counselling must become part of every sickle cell care journey

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