SCD or sickle cell disease is an inherited blood disorder in which red blood cells assume a half-moon or "sickle" shape, which prevents them from carrying oxygen properly throughout the body. These malformed cells may block blood flow into an area, break easily, and create damaging complications, including chronic anemia, painful crises, infections, and organ damage.
How it’s inherited: For a child to have SCD, one faulty gene is inherited from each parent. If one gene is inherited, a person becomes a carrier and is known to have the sickle cell trait, but is mostly symptomless.
Common symptoms: Fatigue, musculoskeletal pain, swelling of hands and feet, recurrent infections, and erectile dysfunction.
Treatment: Although the cure is not yet widespread, bone marrow transplantation and gene therapy are growing rays of hope. Supportive care remains the backbone of treatment and symptom management.
Note: All SCD patients are anemic, but not all cases of anemia are caused by SCD.
Why this scale matters.
A first in India: The ISSSI is the country’s first standardized stigma measurement tool designed specifically for SCD.
Global significance: It is the fourth such tool globally and the first to be validated for the unique cultural context of Indian communities.
Scientific Demonstration: Published in The Lancet Regional Health, South East Asia, the scale is now available for hospitals, clinics, and research purposes across India.
What is included in this ISSSI?
The instrument is divided into two parts, namely:
ISSSI-Pt: Patient-centered
And ISSSI-Cg: For caregivers
It targets different dimensions of stigma, such as:
Family pressures and expectations
Concerns about marriage and reproduction
The burden of chronic illness
Social interactions and the fear of disclosure
Experiences with healthcare practitioners
Built on diverse voices
To ensure inclusivity, the ISSSI was developed with insights from six culturally diverse districts: Alluri Seetharama Raju, Anuppur, Chhoteudepur, Kandhamal, Mysuru, and Udalguri.
Supporting SCD patients through National Health Programmes
Anemia Mukt Bharat (AMB) was launched in 2018 as India’s flagship program aimed at combating anemia among the vulnerable populations through its 6x6x6 strategy.
Who does it help:
Young children
School-age children
Adolescents
Women of reproductive age
Pregnant women
Lactating mothers
Key interventions:
Iron and folic acid (IFA) supplementation
Pesticide and nutrition education
Disease screening, including for SCD
Use of fortified foods and digital tools
A robust support system:
With inter-ministerial coordination, dedicated state units, and a real-time AMB dashboard, the program reaches over 450 million people, improving last-mile access to healthcare across India.
Moving Forward with Hope and Awareness
By removing the social stigma associated with SCD through tools like ISSSI and strengthening care through initiatives like Anemia Mukt Bharat, India is making significant strides in sickle cell care. These efforts not only empower patients but also bring families and communities together in understanding and support.
Reference:
1. Babu, Bontha V., Shantanu Sharma, Sreejith K., Archana Singh, Yashika Chauhan, Prahlad Kumar Sethi, et al. “Indian Council of Medical Research (ICMR)-Sickle Cell Disease (SCD) Stigma Scale for India (ISSSI): Development and Psychometrics.” The Lancet Regional Health – Southeast Asia 37 (2025): 100603. https://www.thelancet.com/journals/lansea/article/PIIS2772-3682(25)00074-5/fulltext.
(Input from various sources)
(Rehash/Muhammad Faisal Arshad/MSM)