Management
overview

THE BEST TIME TO RETHINK YOUR THALASSEMIA MANAGEMENT GOALS IS RIGHT NOW

Actively partner with your healthcare team by communicating all your symptoms, and how they impact your life, to determine the best thalassemia management approach.

Think about using a planner or an app on your phone to make note of your thalassemia symptoms when they pop up. Here are some suggestions for what to keep an eye on:

  • General well-being 
  • Dizziness
  • Heart palpitations
  • Paleness
  • Impact of your symptoms on your everyday life
  • Difficulty doing everyday tasks
  • Fatigue
  • Breathlessness
  • Pain
  • Appetite
  • If your symptoms interfere with or cause you to miss work, social events, or other activities
  • Feelings of isolation and anxiety

Making a note on the day a symptom occurred can help you recall it at your next appointment.

Keep this information handy and refer to it when you’re sharing with your healthcare team.

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People with thalassemia may require supportive therapies like:

Blood transfusion

  • The goal of a blood transfusion is to replenish healthy red blood cells (RBCs) and hemoglobin
  • Some people require transfusion for survival. Others may need it from time to time, or when the body is stressed (example: illness or pregnancy)
  • Whether or not someone receives transfusions and how frequently should be discussed with a healthcare professional

Iron chelation therapy

  • The goal of iron chelation therapy is to help remove excess iron from the body
  • Excess iron in the body can happen because of thalassemia itself and/or transfusion therapy

Folic acid supplementation

  • Folic acid is a vitamin needed to make healthy RBCs

Spleen removal (less commonly performed)

  • The spleen may become enlarged because it is working hard to break down thalassemic RBCs. Spleen removal may be considered to increase RBC counts
Jesse is a real patient living with transfusion dependent alpha-thalassemia
Important information about thalassemia callout

Experts recommend monitoring for complications regularly in ALL people living with thalassemia, no matter your type or whether you get transfusions. Talk to your doctor about supportive therapies and new treatments in development.

This is not medical advice. Please consult with your doctor.

For people with thalassemia, having a care team is crucial

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