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Sickle cell in India: where it is found and how common it is | CION Cancer Clinics
Sickle cell in India is most common in tribal communities across a central belt from Gujarat and Maharashtra through Madhya Pradesh, Chhattisgarh, Jharkhand and Odisha. It is also found in pockets of Telangana, Andhra Pradesh, Tamil Nadu and Kerala. How common it is varies sharply between communities. This page explains where it is found, why, and what it means if your family comes from one of these areas. At CION Cancer Clinics, our haematologist cares for anaemia, bleeding, clotting and inherited blood disorders, with ArogyaSri, CGHS and cashless insurance accepted.
On this page
- Where in India is sickle cell most common?
- Which parts of India carry the gene most often?
- Why is sickle cell more common in tribal communities?
- Is it the trait or the disease?
- What should you do next?
- What do families believe, and what is actually true?
- What do the words on a sickle cell report mean?
- Common questions about sickle cell in India
The short answer
Where in India is sickle cell most common?
Sickle cell is most common in tribal communities of central, western and eastern India. It is also found in pockets of the south, including the forest and hill areas of Telangana and Andhra Pradesh. How common it is changes sharply from one community to the next, even between villages in the same district.
Why a single national number does not help you
You will read many figures for India as a whole. They hide the real picture. In some communities the gene is rare. In others, a large share of adults carry it without knowing. What matters for your family is not the national average. It is whether you or your partner carry the gene, and only a blood test can tell you that.
It is not only a tribal condition
The highest rates are in tribal groups, and that is why screening has started there. But the gene is also found in some non-tribal communities, and families move to towns and cities. Living in Hyderabad does not rule it out if your roots are in an area where it is common.
What this page cannot tell you
This page describes patterns across groups of people. It cannot tell you whether you carry the gene, or how sickle cell will affect one person. A test and a talk with a haematologist, a blood specialist, can.
Where your family comes from is a reason to test. It is never a diagnosis on its own.Across the country
Which parts of India carry the gene most often?
These are broad regions where studies and screening have found sickle cell again and again. Your own district may differ.
The central belt
Madhya Pradesh, Chhattisgarh and the Vidarbha region of Maharashtra form the heart of it. Many tribal groups here have been studied for decades, and screening camps are now common.
Western India
The tribal districts of south and east Gujarat and parts of Rajasthan have long been known for sickle cell. Screening in schools and villages started here early.
Eastern India
Odisha, Jharkhand and parts of West Bengal have large tribal populations where the gene is common. Many families here already know the words "sickle cell" from a relative.
The south, including our region
Northern Telangana, the Agency areas of Andhra Pradesh, the Nilgiris in Tamil Nadu and Wayanad in Kerala all have communities where it is found.
Ask about testing if your family is from
- Tribal or forest villages in Telangana
- The Agency areas of Andhra Pradesh
- Any family where a child had sickle cell
Not sure whether this applies to you?
Ask an oncologistThe reason behind it
Why is sickle cell more common in tribal communities?
Two things explain most of it: malaria in the past, and marriage within the same community over many generations. Neither is anyone's fault.
The malaria link
People who carry one copy of the sickle gene, called sickle cell trait, are better protected against severe malaria. In forest areas where malaria was common for centuries, carriers were more likely to survive and have children. So the gene became common there.
Marrying within the community
When families marry within a small group, a gene that is common in that group stays common. The chance that both partners carry the trait goes up. That is when a child can be born with sickle cell disease.
How it passes to a child
A child needs two sickle genes, one from each parent, to have the disease. When both parents carry the trait, each pregnancy has a 1 in 4 chance of a child with sickle cell disease. There is a 1 in 2 chance of a child who carries the trait, like the parents. The same odds apply to every pregnancy. Having one affected child does not make the next child safe.
Side by side
Is it the trait or the disease?
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If your family is from a high-risk area
What should you do next?
Get a screening test
A simple blood test checks for the sickle gene. Government screening camps in tribal areas offer it, and any haematology clinic can arrange it too.
Confirm a positive result
A quick screening test only shows that sickle haemoglobin is present. A second test, usually HPLC or electrophoresis, tells trait apart from disease.
Test the family
If you carry the trait, your brothers, sisters, partner and children may carry it too. Testing them is how you find out.
Talk before marriage or pregnancy
Two carriers can still marry and have children. Knowing early gives you time to understand the chances and the tests available during pregnancy.
Commonly believed
What do families believe, and what is actually true?
Genes do not change when a family moves. If your parents or grandparents come from a community where sickle cell is common, the chance you carry the gene is the same in Hyderabad as in the village.
Carriers usually feel completely well. The trait can pass quietly through many generations. It often shows up only when two carriers marry and a child is born with the disease.
Many people in India do have a milder pattern, partly because they keep more of the haemoglobin a baby is born with. But severe pain, serious infections and strokes still happen. Every person with the disease needs regular care.
It is a gene, passed on the same way as eye colour. It is common in some communities because of malaria long ago. Talking about it openly helps relatives get tested.
On your report
What do the words on a sickle cell report mean?
- HbAS
- Sickle cell trait. You carry one sickle gene and one normal gene.
- HbSS
- Sickle cell disease. You have two sickle genes, one from each parent.
- HbS
- Sickle haemoglobin, the changed form of the protein that carries oxygen in red blood cells.
- HbF (foetal haemoglobin)
- The type of haemoglobin a baby is born with. Higher levels can soften the effects of sickle cell disease.
- Solubility test
- A quick screening test. A positive result means sickle haemoglobin is present, but it cannot tell trait from disease.
- HPLC
- A laboratory test that measures each type of haemoglobin and confirms whether it is trait or disease.
Questions we are asked
Common questions about sickle cell in India
Is sickle cell common in Telangana and Andhra Pradesh?
It is found in both states, mainly among tribal communities in northern Telangana and the Agency areas of Andhra Pradesh. Both states are part of the national screening mission. It is less common in most non-tribal groups, but it does occur. If your family comes from these areas, a blood test is the only way to know.
Which tribal communities are most affected?
Many tribal groups across central, western, eastern and southern India have been found to carry the gene, and the rate changes a lot from group to group. We do not list communities by name, because a label can lead to stigma and it cannot replace a test. Ask your local health worker whether screening is running near you.
Who should get tested?
Anyone whose family comes from a community where sickle cell is common. Also anyone with a relative who has the trait or the disease, couples planning marriage or pregnancy, and children with repeated unexplained pain, swelling of the hands and feet, or low blood counts. The test is simple and done on a blood sample.
Can a carrier become ill with sickle cell disease later?
No. The trait does not turn into the disease, because your genes do not change. Most carriers live normal lives. A few rare problems can happen at very high altitude or with extreme dehydration during heavy exercise. The main reason to know is so you can plan a family with full information.
Should two carriers not marry?
That decision belongs to the couple. Two carriers can marry and have healthy children. What changes is the chance, in every pregnancy, of a child with the disease. A genetic counsellor or haematologist can explain the odds and the tests offered during pregnancy, so the choice is an informed one.
Why is sickle cell linked with malaria?
Carrying one sickle gene gives some protection against severe malaria. In areas where malaria was common for a long time, carriers were more likely to survive, so the gene spread. That protection does not apply to people with the disease, for whom malaria and other infections can be dangerous.
Is the test free under the government programme?
Screening under the national mission is offered free in the areas it covers, through government health centres and camps. Coverage and rules can change, so check with your nearest primary health centre or district hospital. At a private clinic, ask about the charge and whether your scheme or insurance applies before the test.
My child has been diagnosed. What now?
See a haematologist, a blood specialist, for a care plan. It usually covers vaccines, preventing infection, drinking enough water, knowing the warning signs and regular check-ups. Some children are offered medicines that reduce pain episodes. Your haematologist decides this. Do not start or stop any medicine on your own.
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Sources
- NHS — Sickle cell disease
- NHLBI — What is sickle cell disease?
- National Health Mission, Government of India — National Sickle Cell Elimination Mission portal
- Indian Council of Medical Research — ICMR
This page is general information, not a prescription. Do not change or stop any treatment based on what you read here. If anything is worrying you, contact your own treating team — or call our helpline and we will help you reach the right specialist.
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