thalassemia
WHAT ARE THE SYMPTOMS OF THALASSEMIA?
Symptoms of thalassemia may vary from person to person
Common symptoms include:
Other symptoms include:
- Yellowing of skin and eyes
- Possible pain in stomach area due to enlargement of the spleen or liver
- Changes in facial bones
- Dark urine
- Poor appetite
- Difficulty focusing
It’s important for all people living with thalassemia to be aware of and share symptoms with their care team. Consider tracking your symptoms with an app or a journal.
What symptoms do people with non–transfusion-dependent thalassemia (NTDT) report despite current management strategies?
8 people living with alpha-NTDT were interviewed about their symptoms. They rated each symptom they had and talked about how those symptoms affected their daily lives.
The chart below shows how many of these 8 people experienced each symptom and how severe the symptoms were on average among those who reported experiencing the symptom. A “0” meant no severity and a “10” meant they experienced extreme severity of the symptom.
Severity of symptoms reported by people living with NTDT
What symptoms do people with transfusion-dependent thalassemia (TDT) report despite current management strategies?
18 people who needed regular blood transfusions (5 had alpha-TDT and 13 had beta-TDT) were interviewed about their symptoms. They rated each symptom they had and talked about how those symptoms affected their daily lives.
The chart below shows how many of these 18 people experienced each symptom and how severe the symptoms were on average among those who reported experiencing the symptom. A “0” meant no severity and a “10” meant they experienced extreme severity of the symptom.
Severity of symptoms reported by people living with TDT
18 people with TDT (5 alpha-thalassemia and 13 beta-thalassemia) and 8 people with NTDT alpha-thalassemia who had made no changes to their thalassemia treatment for at least 6 months were interviewed about symptoms, impact, quality of life, and transfusion dependence via open-ended, semi-structured interviews. Symptom severity was rated by patients on a scale of 0-10. 0 meant no severity of symptoms and 10 meant extreme severity of symptoms.
Mean symptom severity among participants reporting the symptom were calculated from responses.
Some symptoms like shortness of breath and bone pain are easy to see. Thalassemia damages your organs inside if not monitored and managed correctly.
Keep track of your symptoms to share with your care team. Download the Thalassemia Tracking Journal.
Take a closer look at the complications of thalassemia