01 Understanding thalassemia · 4 min read
Trait or major: what's the difference?
Thalassemia is inherited. It changes how the body makes haemoglobin, the part of red blood cells that carries oxygen. How much it affects a person depends on how many altered genes they have.
Thalassemia trait (carrier)
One altered gene. Carriers usually feel completely healthy. A blood test may show slightly small red cells or mild anaemia, which is sometimes mistaken for iron deficiency. Carriers don't need treatment and shouldn't take iron tablets unless a test shows they're truly low on iron. Between 5 and 7 percent of Pakistanis carry the trait, most without knowing it.
Thalassemia major
Two altered genes, one from each parent. The body can't make enough healthy haemoglobin. Signs usually appear between six months and two years of age: a pale, tired baby who feeds poorly and grows slowly. With regular transfusions every 2–4 weeks and daily chelation medicine, children can go to school, grow up and live full lives.
How it's passed on
When both parents carry the trait, every pregnancy has the same odds: a 1 in 4 chance of thalassemia major, a 1 in 2 chance of being a carrier, and a 1 in 4 chance of being unaffected. If only one parent is a carrier, no child will have thalassemia major.
02 Prevention · 3 min read
Getting tested before marriage.
Carriers almost never know they're carriers. The only way to find out is a blood test, and the best time is before marriage or before planning a family.
What the test is
A small blood sample from the arm. The lab runs a complete blood count and a haemoglobin test (HPLC or electrophoresis) that measures the different types of haemoglobin. A raised level of one type, HbA2, usually shows beta-thalassemia trait. Results normally take a few days.
If one of you is a carrier
Your children cannot have thalassemia major. Some may be carriers, so it's worth telling them when they grow up.
If you are both carriers
You're not alone, and you have choices. A counsellor will explain the 1 in 4 chance for each pregnancy and talk you through your options, including testing during pregnancy, in private and without judgement.
Our carrier testing is free. Come to our centre or a community camp, as a couple or on your own.
03 Living with thalassemia · 5 min read
Iron overload and chelation, for parents.
Transfusions keep your child alive, but every unit of blood leaves iron behind. The body has no natural way to get rid of it, so it builds up in the heart, liver and glands. Chelation medicine removes it.
The medicines
There are three main chelation drugs. Deferasirox is a tablet taken once a day. Deferiprone is taken by mouth, usually three times a day. Deferoxamine is given as a slow injection under the skin, often overnight with a small pump. Your child's doctor will choose the right one, or a combination.
How we check it's working
A blood test called serum ferritin, every three months, shows roughly how much iron is stored. Where available, a special MRI scan measures iron in the heart and liver directly. Some medicines also need regular kidney, liver or blood count checks.
Tips that help
- Give the medicine at the same time every day, so it becomes routine.
- Don't stop because your child seems well. Iron damage is silent until it's serious.
- Tell the doctor about stomach upset, rashes, fever or changes in urine.
- Bring your medicine record to every transfusion visit.
At Sehar Foundation, chelation medicines and ferritin tests are free for every child in our care.
04 Give blood · 3 min read
Why regular blood donors matter most.
A child with thalassemia major needs blood every 2–4 weeks, for life. That's dozens of units a year for one child, and every unit has to be screened and matched.
Today many families find blood by calling relatives and strangers before each transfusion. Regular, voluntary donors change that. Blood from people who give again and again is the safest, because they're screened every time, and a steady circle of donors means no parent has to search in a hurry.
Can I donate?
Most healthy adults aged 18–60 who weigh over 50 kg can give blood every 90 days. Our team checks your health and haemoglobin before every donation. Giving takes about 15 minutes, and your body replaces the blood within weeks.
