Living with thalassemia: the impact on daily life

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Sometimes I notice that the number of blood donors is limited. It happens when doctors tell me to wait a few more days because there are no compatible blood supplies. When ‘time runs out’ I feel weak, I struggle to perform daily actions, I struggle to have the regular life that I normally lead, it becomes tiring to work.

The impact of thalassemia varies according to severity of the disease. People with mild forms will be able to lead normal or near-normal lives whereas those with severe forms of the disease will require on-going monitoring and treatment.

Regular medical appointments and check-ups can interfere with education or employment and some of the symptoms of thalassemia , such as tiredness, can have a major impact on many daily activities.

+ Employment

Regular appointments and check-ups may mean that employees frequently have to take time off work. Symptoms such as fatigue can affect performance, particularly in the week before blood transfusion, and this may need to be taken into account when assigning duties at work.

Employers may not be familiar with thalassemia . It is a good idea to ensure that they understand what thalassemia is and how it affects people. This will allow them to take account of specific needs, for example by offering flexible working hours or adapting duties.

+ Schools and college studies

Regular appointments and check-ups may mean that schoolchildren and students frequently have to take time off classes or lectures. This can affect attendance records

Children and students may tire easily, particularly in the week before blood transfusions. This can impair memory and concentration, which can have an impact on learning and general progress.

Children with thalassemia should be encouraged to take part in sports and other activities as much as possible but should be excused if they complain of feeling very tired.

School staff may not be familiar with thalassemia . It is helpful to make sure staff are aware of the condition and how it affects children and young adults. This will allow them to take account of specific needs, for example by allowing more time for assignments, providing notes from missed lessons or lectures or providing materials for home study.

+ Mental health

Sometimes it’s okay to not to feel okay. It’s okay to open up to somebody about how we are feeling.

Living with a long-term condition that needs on-going management can have a negative impact on mental health. Uncertainty over what the future may hold can lead to feelings of anxiety and stress. Some studies have shown that children with thalassemia experience higher than usual levels of depression and anxiety.

Regular, sometimes daily, treatments are a constant reminder of being ill and can lead to a sense of feeling ‘different’ or isolated from family or friends.

Symptoms such as fatigue can sometimes make it difficult to take part in social activities and this can affect friendships and family life.

It is helpful to be open and honest with family and friends, who may not understand the impact of thalassemia .

If negative feelings are becoming difficult to cope with, it is important to ask for help, including seeking advice from a medical professional. A range of techniques can be helpful. These include learning relaxation techniques, breathing exercises, meditation, mindfulness, cognitive behavioural therapy or counselling.

+ Family planning

There’s a certain uniqueness to living with a genetic blood disorder while raising a child with the same illness. It’s a lifelong process of learning to live with the illness, living in spite of it, then learning to live because of it.

Even in people with mild thalassemia , there is a risk of passing on a more serious type of the condition to children. Women who carry the thalassemia gene and are planning to start a family may first wish to find out if their partner is a carrier, if possible.

If a woman becomes pregnant, and both partners are carriers, she may be offered a chorionic villus sampling test to see whether the unborn baby has the thalassemia gene. Genetic counselling may be offered to help couples consider some of the issues associated with passing the thalassemia onto children and to determine the risk.

Women with severe types of thalassemia can still have a healthy pregnancy but may need additional monitoring for heart problems.

Some women with thalassemia may need fertility treatment to help them get pregnant.

Practical tips for people living with thalassemia >

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