Practical tips for people living with thalassaemia

Practical tips for people living with thalassaemia

It is important to attend appointments and to follow medical advice but people living with thalassaemia can do much more to manage their condition effectively. Taking an active role in their own management will help them to remain as healthy as possible and improve mental and physical well-being. The following tips can be helpful.

 

+Become an expert on thalassaemia

  • Learn as much as possible about thalassaemia and how it is best managed. Even if you do not require blood transfusions, it is important to seek information on how to manage the long-term risk of developing iron-overload.
  • If there is anything you are unsure about, ask one of your healthcare team. It can be helpful to make a note of questions that you think of between appointments.
  • Many people with thalassaemia find it helpful to get in touch with others with the same condition so they can share common experiences.
  • Patient groups are an excellent source of up-to-date information and valuable support.

 

+Make positive lifestyle choices

  • People with thalassaemia, like all people, can benefit from eating a varied, healthy diet
  • Some people with thalassaemia may be advised to take supplements such as folic acid, calcium or vitamin D. If this applies to you, make sure you follow medical advice.
  • If possible, take regular exercise to help keep the bones strong.
  • Avoid taking iron pills unless advised to do so by your doctor.
  • As is recommended for all people and especially those with long-term health conditions, it is advisable to avoid smoking and drinking excessive amounts of alcohol.
  • People with severe forms of thalassaemia are more prone to some types of infection. Take steps to avoid infection, where possible, and seek medical advice at the first sign of infection (e.g. fever).
  • It is also important to ensure vaccinations are up-to-date.

 

+Learn to cope with fatigue

  • Extreme tiredness is a common symptom of thalassaemia.
  • Pace yourself: if you know you have a busy day coming up, allow time for rest before and after.
  • Do not commit to too many activities.
  • Make sure those around you understand that fatigue is a symptom of thalassaemia.
  • Be honest with others about how you are feeling, particularly if you are finding it hard to cope. Ask for help if you need it.
  • Try and build in some ‘down time’ every day when you can rest and recover.

 

+Join a patient organisation

  • Patient groups are an excellent source of up-to-date information and valuable support.
  • The Thalassaemia International Federation (TIF) has a wealth of resources and provides links to local organisations around the world, to help you find support on your own country: https://thalassaemia.org.cy/who-we-are/tif/membership/tif-members/

 

Further reading >

< Living with thalassaemia: the impact on daily life