WORKING WITH A CARE TEAM
Thalassemia is a complex condition that may involve more than your blood
Because thalassemia affects everyone differently, care teams may be unique to each person’s needs. The care team may also change over time to continue to suit individual needs and circumstances.
Hematologists are experts in blood disorders. They specialize in monitoring blood health and treatment. Some hematologists specialize in thalassemia. They can work with other specialists when needed (for example, a cardiologist to check your heart or an endocrinologist to check for diabetes or thyroid conditions).
There are also centers that specialize in thalassemia across the country. Some people with thalassemia visit a thalassemia center once a year or more. A thalassemia expert from the center can work with their local hematologist or primary care doctor.
Finding a hematologist whom you can trust can help you feel confident that the complex needs of your thalassemia are being met. Asking your primary care doctor for a referral may be a good first step.
Other members of your team may include:
Primary care physician (PCP)
Nutritionist
Cardiologist
Endocrinologist
Psychiatrist/
psychologist
Nurse specialist

Remember that you and your family are key players in your health and well-being. Partner with your care team by communicating your symptoms and how they impact your life to determine the best thalassemia management approach. Start by tracking your symptoms every step of the way with our downloadable Thalassemia Tracking Journal.
Helpful topics for discussion with your care team
Here are some observations and questions that could be helpful:
- “Here are symptoms I’m experiencing and how often they make me miss out on activities.”
- “These are activities I’m no longer or rarely able to do based on my symptoms.”
- “How often should my hemoglobin and ferritin levels be checked?”
- “Are there specific signs of complications I should be aware of?”
- “What is the plan for regular screenings and tests?”
- “Are there any new treatments or clinical trials available that might be suitable for me?”
- “What are the potential complications we should be monitoring for?”
- “How should I manage symptoms or complications between appointments?”

Arming yourself with knowledge can help you feel more confident to share your concerns and questions.
This is not intended as medical advice. For medical advice, please contact your healthcare team.
I feel like I’m stuck in this never-ending loop of blood transfusions. It really affects your ability to take care of others when you’re trying to just take care of yourself.

Beta-TDT=transfusion-dependent beta-thalassemia.
It’s important to know you’re not alone with thalassemia
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