What sickle cell is
Sickle cell disease is an inherited blood disorder. A change in the hemoglobin gene (HbS) makes red cells stiff and curved like a sickle when oxygen is low. They block small blood vessels and break down early, causing anaemia, severe pain episodes, infections and, in some people, stroke or organ damage.
- Sickle cell trait (one copy, HbAS): you're a carrier. Carriers are healthy and usually never know. What sickle cell trait means.
- Sickle cell disease (two copies, HbSS, or HbS with another variant like beta thalassemia): the condition itself.
The form common in India often comes with higher levels of fetal hemoglobin (HbF), which can make the disease milder on average than in some other regions. It can still be severe, and many people in India are diagnosed late.
Where in India it's common
The sickle gene is widespread among tribal communities, with carrier rates ranging from about 1% to 40% between groups. It's most concentrated across central India (Madhya Pradesh, Chhattisgarh, eastern Maharashtra, Odisha and Jharkhand), parts of Gujarat and Rajasthan, and pockets of the south, such as the Nilgiri hills and Wayanad. It's also found in some non-tribal communities in these regions.
If your family comes from one of these areas, it's worth testing even if no one in the family has been diagnosed. Carriers have no symptoms, so the gene can pass quietly for generations.
The National Sickle Cell Anaemia Elimination Mission
Launched in July 2023, the mission aims to screen about 7 crore people aged up to 40 in 17 high-burden states, and to eliminate sickle cell disease as a public health problem by 2047. By July 2025, over 6 crore people had been screened, about 2.15 lakh had been diagnosed with the disease and about 16.7 lakh identified as carriers.
People who are screened get a card showing their sickle cell status, and counselors encourage couples to compare cards before marriage, much as families compare kundlis. Progress has been uneven between states, so if you haven't been screened, you can ask at a government health centre or get tested at a private lab.
The tests
| Test | What it does |
|---|---|
| Solubility test | A cheap screen that shows whether HbS is present. It can't tell trait from disease, and needs confirming |
| Point-of-care rapid tests | Quick card tests used in the mission. They can tell carriers from people with the disease |
| Hb HPLC | Confirms the result and also shows beta-thalassemia trait, HbE and HbD. How to read an HPLC report |
| DNA test | Names the exact variants. Used for testing a pregnancy |
If you're testing before marriage, ask for Hb HPLC: one test covers sickle cell and thalassemia, the two that matter most for Indian couples.
What it means for a couple
| Partner 1 | Partner 2 | Each pregnancy |
|---|---|---|
| Sickle cell trait | Not a carrier | No sickle cell disease. 1 in 2 chance the child is a carrier |
| Sickle cell trait | Sickle cell trait | 1 in 4 chance of sickle cell disease |
| Sickle cell trait | Beta-thalassemia trait | 1 in 4 chance of sickle beta-thalassemia |
Two carriers can marry and have healthy children. Knowing in advance means you can see a genetic counselor, test a pregnancy early, or consider IVF with embryo testing. Try the carrier odds calculator.
Treatment
Early diagnosis, vaccinations, hydroxyurea and good follow-up care help many people with sickle cell disease live long, full lives. A bone marrow transplant can cure it in some children, and new gene therapies have been approved in some countries but are very expensive. Prevention through testing remains the most practical step for most families.
General information, not medical advice. Talk to a doctor about testing and treatment.
Sources
- Colah RB et al. Sickle cell disease in tribal populations in India. Indian J Med Res 141(5):509–515 (2015)
- All India Radio: Six crore screened under sickle cell mission, over 2 lakh diagnosed, 16 lakh carriers identified (July 2025)
- Medical Dialogues: India screens 5.72 crore people to fight sickle cell disease (June 2025)
- Modell B, Darlison M. Global epidemiology of haemoglobin disorders. Bulletin of the WHO (2008)