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Sickle cell disease, explained for families | CION Cancer Clinics
Sickle cell disease is an inherited blood condition. Red blood cells carry a changed haemoglobin, turn stiff and curved, and block small blood vessels. That causes sudden pain episodes, low haemoglobin, infections and, over years, organ damage. You are born with it; it does not spread between people. It is lifelong, and regular care with a haematologist prevents many crises. A confirmatory blood test, not a screening test alone, tells you whether you have it. At CION Cancer Clinics, our haematologist cares for anaemia, bleeding, clotting and inherited blood disorders, with ArogyaSri, CGHS and cashless insurance accepted.
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Medically reviewed by Dr. Basudev PokhrelConsultant Haematologist · last reviewed September 2026, next review due September 2027
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On this page
- What is sickle cell disease, in plain words?
- What does sickle cell disease do to the body?
- How is sickle cell disease confirmed?
- What do the words on the report mean?
- What do families get wrong about sickle cell?
- How is sickle cell disease managed, and what can this page not tell you?
- Common questions about sickle cell disease
The short answer
What is sickle cell disease, in plain words?
Sickle cell disease is a blood condition you are born with. Your red blood cells carry a changed form of haemoglobin, and under stress they bend into a stiff, curved sickle shape that sticks in small blood vessels.
Why the shape causes trouble
A healthy red cell is soft and round. It squeezes through the thinnest vessels and lives for a few months. A sickled cell is rigid and breaks down much sooner. Two things follow. The blood runs short of red cells, so haemoglobin stays low and you feel tired. And the stiff cells jam in small vessels, cutting off blood to bones, lungs, the brain or the spleen. That blockage is what causes the sudden, severe pain people call a crisis.
How a person gets it
It passes from parents to children through genes. A child has the disease only when both parents pass on a changed gene. It does not spread from person to person, and nothing the mother ate or did in pregnancy caused it.
Why this matters in Telangana and Andhra Pradesh
The sickle gene is common in several tribal and rural communities of central and southern India, including parts of both states. Many families only find out when a child keeps getting pain, fever or yellow eyes.
This page explains the condition. It cannot tell you whether you or your child has it. Only a blood test can.
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When not to wait at home
If someone with sickle cell disease has a fever, chest pain, breathlessness, sudden weakness on one side, slurred speech, a swollen tummy with pale lips, or pain that normal home measures do not settle, go to the nearest emergency department now or call 108. Say clearly that the person has sickle cell disease. Do not wait for the morning clinic, and do not change any medicine on your own first.
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What does sickle cell disease do to the body?
The effects differ widely. Two siblings with the same test result can have very different lives with it.
Pain episodes
Sudden deep pain in the bones, back, chest or joints when sickled cells block blood flow. Cold, dehydration, infection and exhaustion can set one off.
In small children, often
- Painful swelling of the hands and feet
- Crying on being picked up
Low haemoglobin
Red cells break down early, so the count stays below normal. You may feel tired, look pale and get breathless on stairs. Yellow eyes are common because of the broken-down cells.
Infections
The spleen, which helps fight certain germs, gets damaged early in life. That is why young children with the disease need vaccines, preventive antibiotics chosen by their doctor, and fast care for any fever.
Organ damage over years
Repeated blockages can harm the lungs, kidneys, eyes, hip joints and brain. Regular check-ups aim to find this early, before it causes symptoms.
Stroke is a known risk in children. Screening exists for it.Finding out
How is sickle cell disease confirmed?
A screening test
A quick solubility test, often done in school or village camps, shows whether sickle haemoglobin is present. It cannot tell a carrier from someone with the disease.
A confirmatory test
A test called HPLC or electrophoresis sorts the types of haemoglobin in your blood. This is the result that tells trait apart from disease. Ask which laboratory runs it.
Testing the family
Once one person is confirmed, parents, brothers and sisters are usually tested too. This matters most before marriage and before a pregnancy.
A plan with a haematologist
A haematologist, a doctor for blood conditions, reads the results with your symptoms and sets up regular reviews, vaccines and a written plan for crises.
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On your report
What do the words on the report mean?
- HbS
- Sickle haemoglobin, the changed form that makes cells bend.
- HbSS
- You carry two sickle genes, one from each parent. This is the most common form of the disease.
- HbAS
- One normal gene and one sickle gene. This is sickle cell trait, a carrier state, and not the disease.
- HbS beta thalassaemia
- One sickle gene and one thalassaemia gene. It behaves like sickle cell disease, sometimes milder, sometimes not.
- HbF
- Foetal haemoglobin, the baby form. Higher levels tend to protect against sickling.
- Reticulocytes
- Young red cells. A raised count shows the marrow is working hard to replace cells that break down early.
Commonly believed
What do families get wrong about sickle cell?
"It is catching, so keep the child away from others."
It is inherited, not infectious. A child with sickle cell disease can share food, play and sit in class with others. Keeping them apart only harms their schooling and confidence.
"The pain is exaggerated. Nothing shows on the X-ray."
Crisis pain comes from blocked blood flow inside the bone, which usually does not show on a plain X-ray. It is real and can be severe. Take it seriously and get it treated early.
"Iron tonics will fix the weakness."
The low haemoglobin in sickle cell is not usually from lack of iron. Extra iron, especially after many transfusions, can build up and cause harm. Ask the haematologist before giving any tonic.
"If both of us are carriers, we cannot marry."
Two carriers can marry. Each pregnancy has a chance of a child with the disease, and testing during pregnancy is available. Knowing early gives you choices instead of surprises.
Being straight with you
How is sickle cell disease managed, and what can this page not tell you?
It is lifelong, and it can be managed well. Regular care prevents many crises and finds damage early. Most of the treatment happens between emergencies, not during them.
What care usually includes
Vaccines and preventive antibiotics for young children. Plenty of water and avoiding cold and overheating. A medicine called hydroxyurea for many people, which raises the protective foetal haemoglobin. Blood transfusions for certain complications. Regular checks of the eyes, kidneys and, in children, stroke risk. The treating team decides which of these you need and never changes them over the phone.
What about a bone marrow transplant?
A transplant can replace the faulty blood-making cells. It suits only some people, usually a child with a matched brother or sister and severe disease. It carries serious risks. CION's haematology team can review your case and help you reach a qualified transplant centre; it does not do transplants itself.
What this page cannot tell you
It cannot tell you how severe your own or your child's disease will be, or what the future holds. That depends on the exact type, how often crises happen and which organs are affected. Your haematologist can give you that picture.
Questions we are asked
Common questions about sickle cell disease
Is sickle cell disease the same as sickle cell trait?
No. Trait means you carry one sickle gene and one normal gene. Most people with trait have no illness from it. The disease means two changed genes and lifelong symptoms. The screening test cannot tell them apart, so a confirmatory test is needed before anyone is told which they have.
At what age does it usually show up?
Babies are protected for the first months of life by their foetal haemoglobin. As that fades during infancy, signs such as painful swollen hands and feet, fever, paleness or yellow eyes can appear. Some people are only diagnosed later, after repeated pain or during a pregnancy check.
If one child has it, will all my children have it?
Not necessarily. When both parents are carriers, each pregnancy carries the same chance, whatever happened before. One child may have the disease, another trait, and another neither. Test every child, including those who seem well, so you know where each one stands.
Can my child go to school and play sports?
Yes, in most cases. Tell the school, send a water bottle, allow rest breaks and keep the child warm in cold weather. Very hard exercise in heat needs care. Share the crisis plan with the teacher so they know which signs mean calling you or an ambulance straight away.
Can a woman with sickle cell disease have a baby?
Many do. Pregnancy raises the risk of crises, clots and other problems for both mother and baby, so it needs planning with a haematologist and an obstetrician together. Talk to them before trying to conceive, because some medicines need review before pregnancy. Do not stop any medicine yourself.
Does diet or ayurvedic medicine help?
Good food, enough water and folic acid, if your doctor prescribes it, support general health. No herbal or home remedy has been shown to stop sickling. Some can interact with prescribed medicines or harm the kidneys. Tell your haematologist about anything you take, so they can check it.
Is treatment free under government schemes?
Much of it can be. The national sickle cell mission supports screening and cards, and state programmes, Aarogyasri, PM-JAY, CGHS, ECHS and EHS may cover tests, hospital stays and some medicines. Entitlements change, so check the current rules for your card before you travel.
What should I bring to a first haematology appointment?
Bring every blood report, especially the HPLC or electrophoresis result, any discharge summaries, a list of medicines and vaccines, and the reports of tested family members. Write down how often pain episodes happen and what triggers them. That record helps the team plan care more than any single test.
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Meet CION's haematologist. One specialist for your blood report and your plan.
Dr. Basudev Pokhrel reviews blood counts, transfusion needs and blood disorders, and works with the CION tumour board on blood cancers.
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Sources
- NHS — Sickle cell disease
- National Heart, Lung, and Blood Institute — Sickle Cell Disease
- American Society of Hematology — Sickle Cell Disease
- National Health Mission — National Sickle Cell Elimination Mission
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.
Keep reading
Related pages
Sickle Cell Trait vs DiseaseWhat a carrier result means for you and your childrenWhen a Sickle Cell Crisis Needs HospitalThe warning signs that cannot waitHydroxyurea in Sickle Cell DiseaseHow the main long-term medicine helpsSickle Cell Schemes, Cards and Free TreatmentWhat government schemes may coverSickle Cell DiseaseEvery guide in this series
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