Talasemia (thalassemia) is a group of inherited blood conditions in which the body cannot make haemoglobin properly, which can cause anaemia. It is common in Malaysia: about 1 in 20 Form Four students screened by the Ministry of Health from 2016 to 2018 were carriers (pembawa talasemia). Carriers are usually healthy and need no treatment, but if both parents are carriers of beta thalassemia, each child has a 1 in 4 chance of being born with thalassemia. Severe types need lifelong blood transfusions and medicine to remove extra iron. A simple blood test shows whether you are a carrier, and carriers should not take iron supplements unless iron deficiency is confirmed.
Talasemia maksud: what is thalassemia?
According to the NHS, thalassemia (also spelled thalassaemia; talasemia in Malay) is the name for a group of inherited conditions that affect haemoglobin, the substance red blood cells use to carry oxygen around the body.
- In people with thalassemia, some of their haemoglobin does not work properly, which can make them very anaemic (tired, short of breath and pale).
- It is caused by faulty genes passed down from parents. It is not caused by anything the parents did before or during pregnancy, and you cannot catch it from someone who has it.
- It mainly affects people of Mediterranean, South Asian, Southeast Asian and Middle Eastern origin, including people with family roots in China and Southeast Asia.
How common is thalassemia in Malaysia?
Thalassemia carriers are common in Malaysia, which is why the Ministry of Health screens secondary school students:
- From 2016 to 2018, 689,460 Form Four students were screened in schools, and 31,716 were found to be thalassemia carriers. The Ministry said the data shows about 1 in every 20 people screened is a carrier (Bernama, 2021).
- By November 2025, 58,428 carriers had been detected among 1.8 million Form Four students screened since 2016 with their parents' or guardians' permission. The Health Minister said the rate of new births with thalassemia has been consistently decreasing since screening began (Malay Mail, 2025).
- The Ministry has said each thalassemia major patient needs an estimated RM3 million of treatment over 30 years, and it aims to cut new thalassemia births by at least half within the next decade by expanding premarital and antenatal screening.
What are the types of thalassemia?
According to the NHS, the different types of thalassemia can be divided into alpha and beta thalassemias:
| Type | What it means |
|---|---|
| Thalassemia carrier (trait, or thalassemia minor) | One faulty gene; you do not have thalassemia and are usually healthy, but you can pass the gene on |
| Beta thalassemia major | The most severe type; symptoms usually start a few months after birth and regular blood transfusions are needed |
| Other types: beta thalassemia intermedia, alpha thalassemia major and haemoglobin H (HbH) disease | How much treatment is needed depends on the type; people with less severe types may only need occasional transfusions |
Pembawa talasemia: what does it mean to be a carrier?
Being a carrier (pembawa talasemia) means you carry one of the faulty genes that cause thalassemia, but you do not have thalassemia and will never develop it. According to the NHS:
- carriers are usually healthy and have no symptoms;
- some carriers have mild anaemia because their red blood cells are smaller than usual, which may cause tiredness and pale skin or may only show up on a blood test;
- this anaemia is different from iron deficiency anaemia and does not need any treatment;
- do not take iron supplements for anaemia unless you have been diagnosed with iron deficiency anaemia, because taking iron when you already have enough could be harmful.
If you know you are a carrier, tell your doctor when you are being checked for anaemia. See our guide to kurang darah (anaemia) for other causes of anaemia.
How is thalassemia passed on to children?
Genes come in pairs, one from each parent. To be born with beta thalassemia, a child has to inherit a faulty gene from both parents, which usually happens when both parents are carriers. According to the NHS, if both parents carry beta thalassemia, then for each pregnancy there is a:
| Chance | What happens to the child |
|---|---|
| 1 in 4 (25%) | Does not inherit any faulty gene: no thalassemia and cannot pass it on |
| 1 in 2 (50%) | Inherits one faulty gene: becomes a carrier, like the parents |
| 1 in 4 (25%) | Inherits a faulty gene from both parents: born with thalassemia |
If only one parent is a carrier, children cannot be born with beta thalassemia from that parent alone, but they may be carriers. Alpha thalassemia involves 4 genes rather than 2, so its inheritance is more complex: children are born with the condition if they inherit 3 or 4 faulty copies, and are carriers if they inherit 1 or 2. Carriers of thalassemia can also have a child with a blood condition if their partner carries a different type of blood disorder.
What are the symptoms of thalassemia?
Carriers usually have no symptoms. People born with beta thalassemia major usually develop health problems a few months after birth, while less severe types may not be noticed until later in childhood or adulthood. According to the NHS, the main problems are:
- anaemia: tiredness and lack of energy, shortness of breath, a pounding, fluttering or irregular heartbeat, pale skin, and yellowing of the skin and eyes (jaundice);
- too much iron in the body, usually a side effect of repeated transfusions, which can cause heart problems, liver scarring, delayed puberty, low hormone levels, diabetes and thyroid problems if not treated;
- other problems: delayed growth in childhood, gallstones, unusual bone growth (such as an enlarged forehead or cheeks), weak bones (osteoporosis) and reduced fertility.
How do you find out if you are a carrier?
A simple blood test shows whether you have thalassemia or are a carrier, and it can be done at any age. In Malaysia:
- thalassemia screening is offered to Form Four students (around age 16) in schools, with parental consent;
- the Ministry of Health is expanding premarital and antenatal (pregnancy) screening.
Testing is especially useful if you have a family history of thalassemia, your partner is known to be a carrier, or you are planning to marry or have children. If you and your partner are both carriers, the NHS advises seeing a genetic counsellor, who can explain the risks and options, such as tests during pregnancy to check whether the baby has thalassemia. Ask your doctor or klinik kesihatan about testing. If you are pregnant or planning a pregnancy, see also our guides to tanda-tanda mengandung and folic acid for pregnancy.
How is thalassemia treated?
Carriers do not need treatment. People with thalassemia major or other severe types need lifelong specialist care. According to the NHS, the main treatments are:
- Blood transfusions: given through a drip in hospital to treat and prevent anaemia. People with beta thalassemia major may need one about once a month; those with milder types may only need them occasionally.
- Chelation therapy: medicine to remove extra iron that builds up from transfusions, because high iron levels can damage organs. It may be given as an infusion under the skin (desferrioxamine) or as tablets or liquid (deferiprone, deferasirox).
- Stem cell or bone marrow transplant: the only cure, but not done often because of significant risks, such as graft versus host disease.
- Treatment for other problems, such as hormone medicines for delayed puberty, thyroid hormones, and vaccinations and antibiotics to prevent and treat infections.
Living with thalassemia: diet, supplements and daily care
If you have thalassemia, the NHS suggests these steps to stay as healthy as possible:
- Eat a healthy, balanced diet. You do not usually need a special diet, although your doctor may advise supplements such as folic acid, calcium or vitamin D. Do not take iron supplements unless your doctor advises it.
- Exercise regularly, especially weight-bearing and aerobic exercise, to help strengthen bones.
- Avoid smoking and too much alcohol to protect your bones and heart.
- Avoid infection: wash your hands often, avoid close contact with sick people where possible, and keep vaccinations up to date.
- Take your medicines as advised and attend all check-ups.
- Tell your surgeon you have thalassemia before any operation under general anaesthetic, and speak to your care team before planning a pregnancy.
For more on folate and folic acid, see our guide to folate vs folic acid. Supplements are not intended to diagnose, treat, cure or prevent any disease, and should only be taken for thalassemia as advised by your care team.
Frequently asked questions (FAQ)
What does talasemia (thalassemia) mean?
Talasemia, or thalassemia (also spelled thalassaemia), is a group of inherited blood conditions that affect haemoglobin, the substance red blood cells use to carry oxygen. In people with thalassemia, some haemoglobin does not work properly, which can cause anaemia: tiredness, shortness of breath and pale skin. It is passed down from parents through genes; you cannot catch it from someone.
What is a thalassemia carrier (pembawa talasemia)?
A carrier has one faulty thalassemia gene but does not have the condition. Carriers are usually healthy, although some have mild anaemia because their red blood cells are smaller than usual. The main concern is that if both partners are carriers of beta thalassemia, each child has a 1 in 4 chance of being born with thalassemia.
How common is thalassemia in Malaysia?
It is common. Under the Ministry of Health's school screening programme, 31,716 of 689,460 Form Four students screened from 2016 to 2018 were found to be carriers, about 1 in 20. By November 2025, 58,428 carriers had been detected among 1.8 million students screened since 2016.
What are the symptoms of thalassemia?
Carriers usually have no symptoms. People with severe types, such as beta thalassemia major, usually develop symptoms a few months after birth, mainly anaemia: tiredness, shortness of breath, a pounding or irregular heartbeat, pale skin and yellowing of the skin and eyes. Without proper treatment, iron build-up from transfusions can damage the heart, liver and hormone glands.
Should a thalassemia carrier take iron supplements?
Not unless a doctor has diagnosed iron deficiency. The NHS says the mild anaemia in carriers is different from iron deficiency anaemia and does not need treatment, and that taking iron supplements when you already have enough iron could be harmful. Ask for a blood test before taking iron for tiredness or anaemia.
How is thalassemia treated?
Carriers do not need treatment. People with thalassemia major or other severe types need lifelong specialist care, mainly regular blood transfusions (sometimes about once a month) and chelation therapy, medicine that removes the extra iron that builds up. A stem cell or bone marrow transplant is the only cure, but it is not done often because of its risks.
How do I know if I am a carrier?
A simple blood test shows whether you are a carrier. In Malaysia, screening is offered to Form Four students in schools with parental consent, and the Ministry of Health is expanding premarital and antenatal screening. If you were not screened, have a family history, or are planning marriage or pregnancy, ask your doctor or klinik kesihatan about testing for you and your partner.
Disclaimer
This article is for general information only and is not a substitute for advice, diagnosis or treatment from a doctor or genetic counsellor. Health supplements are not intended to diagnose, treat, cure or prevent any disease.
References
- Thalassaemia — NHS
- Thalassaemia: symptoms — NHS
- Thalassaemia: causes — NHS
- Thalassaemia: diagnosis — NHS
- Thalassaemia: treatment — NHS
- Thalassaemia: living with — NHS
- Thalassaemia carriers — NHS
- MOH outlines importance of thalassemia awareness (15 September 2021) — Bernama
- Thalassemia carriers detected in over 58,000 Malaysian Form Four students since 2016 (1 November 2025) — Malay Mail
