India has the second-highest number of sickle cell disease (SCD) cases in the world after sub-Saharan Africa.
Before now, India did not have a tool to measure the stigma faced by people with SCD.
The Indian Council of Medical Research (ICMR) developed India’s first SCD stigma scale called ISSSI (ICMR-SCD Stigma Scale for India).
Global stigma scales didn’t fit India well due to its diverse culture and population.
The ISSSI includes two parts: one for patients (ISSSI-Pt) and one for caregivers (ISSSI-Cg).
A recent study validated the scale’s effectiveness, showing it measures different stigma types like family, social, illness burden, relationships, and healthcare issues.
The scale is scientifically strong and useful for doctors and researchers in India.
The study was done in six districts across India, representing different cultures and healthcare access.
Sickle cell disease causes painful episodes, fatigue, infections, and organ damage, greatly affecting lives.
Sickle cell disease
Sickle cell disease (SCD), also simply called sickle cell, is a group of hemoglobin-related blood disorders typically inherited.
The most common type is known as sickle cell anemia.
It results in an abnormality in the oxygen-carrying protein haemoglobin found in red blood cells.
This leads to a rigid, sickle-like shape under certain circumstances.
Problems in sickle cell disease typically begin around 5 to 6 months of age.
A number of health problems may develop, such as attacks of pain (known as a sickle cell crisis) in joints, anemia, swelling in the hands and feet, bacterial infections, dizziness and stroke.
It often gets worse with age.
All the major organs are affected by sickle cell disease.
Sickle cell disease occurs when a person inherits two abnormal copies of the β-globin gene (HBB) that makes haemoglobin, one from each parent.
This gene occurs in chromosome 11.
Several subtypes exist, depending on the exact mutation in each haemoglobin gene
SCD mainly affects tribal communities in India, who face poor healthcare access and lack of awareness, adding to the disease’s burden.
India has launched a national mission to eliminate sickle cell disease as a public health problem by 2047.
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