Reena had never heard of Thalassaemia until her son Jovan was diagnosed at 18 months.
“From birth, he struggled to drink milk and was underweight,” she says. “Every cold would turn into a fever, and we often had to take him to hospital for antibiotics.”
Thalassaemia is a group of inherited blood disorders where the body produces little or no haemoglobin, the protein in red blood cells that carries oxygen. This can cause anaemia, leading to fatigue, poor growth, and in severe cases, a lifelong need for blood transfusions every 2-4 weeks.
Reena, who lives in Medway, says, “Having a child who needs regular blood transfusions is incredibly hard. It took me time to come to terms with it emotionally, and the frequent hospital visits take a mental toll on Jovan and the whole family.”
For Jovan, transfusions are a two-day process: blood tests on Sunday and the transfusion on Monday. Reena explains, “On transfusion days, we’re usually at the hospital from 8:30 am until around 3 pm. Balancing this with full-time work has been a real challenge for my husband and me.”
Thalassaemia affects all backgrounds but is more common in South Asian, Southeast Asian, Mediterranean, and Middle Eastern communities. In the UK, about 2,300 people have the condition, with 800 needing regular transfusions, mostly Pakistani, Indian, and Bangladeshi.
Inherited through genes, around 200,000 people in England carry the Thalassaemia gene. Carriers usually have no symptoms but can pass the gene to their children. Dr Rossby Awadzi explains that if both parents carry the gene, there’s a 25% chance their child will have Thalassaemia and a 50% chance they’ll be a carrier.
Naseema from Preston, like many, had never heard of Thalassaemia until she and her husband were found to be carriers during pregnancy. She says, “Our families had only vague memories of the condition, which was often forgotten or overlooked over time.”
How can I find out if I’m a Thalassaemia carrier?
You can contact your GP or local Sickle Cell and Thalassaemia Centre to request a specific Thalassaemia blood test, as it isn’t detected in routine blood work. Reena encourages family members to get tested after her son’s diagnosis, stressing the importance of early awareness to protect future generations. Naseema shares how conversations about Thalassaemia helped her friend’s family recognize their carrier status, highlighting the value of open dialogue. While all pregnant women and newborns in England are offered screening, knowing your carrier status before having children allows for informed decisions. Genetic counselling is a valuable option, offering guidance and choices such as IVF to prevent passing on the gene. As Reena says, “Having the knowledge gives you options.” Dr Rossby Awadzi adds, “Knowing early is kinder than reacting later. Genetic counselling dispels myths, provides real options, and reminds us that knowledge empowers rather than punishes.” Encouraging family members to get tested or seek counselling can make a significant difference to their health and wellbeing.
Why is blood donation crucial for Thalassaemia patients?
Blood donations are vital for people who need regular transfusions and usually take just 5–10 minutes, with one donation able to save up to three lives. Donating blood is safe and supported by major UK religions. Naseema’s son has received 138 transfusions in nine years, and she says, “If I could thank every donor personally, I would. Their blood has kept my son alive.”
There are several ways to help. Giving blood is especially important since only 3% of donors come from South Asian backgrounds, yet Thalassaemia patients need closely matched blood. Getting tested for the Thalassaemia trait through a simple blood test is also crucial, contact your GP or local Sickle Cell and Thalassaemia Centre for free NHS testing. Finally, spreading awareness about Thalassaemia, the importance of blood donation in all communities, and available screening for pregnant women and newborns can make a real difference.
