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Managing thalassemia
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
Swelling
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.
Asking questions is a form of self-advocacy
Here are some questions and observations that could be helpful to share with your healthcare providers:
Here's how often my symptoms make me miss out on activities (share what those symptoms are and how frequently they impact your plans)
These are activities I'm no longer or rarely able to do based on my symptoms (share what those symptoms are)
How often should my hemoglobin and ferritin levels be checked?
Are there specific signs of complications I should watch for?
How should I manage symptoms or complications between appointments?
What is the plan for regular screenings and tests?
Are there any new treatments or clinical trials available that might be suitable for me?
Should I be taking any supplements or medications regularly?
What are the long-term outlook and potential complications of my specific case of thalassemia?
Being open about your health concerns is a bold and rewarding move
Talking to others about your experiences can help you move from feeling isolated to finding your place in a supportive community.
It also heightens awareness about thalassemia and benefits others.
Joining with advocacy groups that are building bridges between the medical community, patients, families, and the public can be a great place to feel supported.
At Agios, we are committed to raising awareness and advocating for better care, as well.
Together, by speaking up, we can start to make a difference—for ourselves and our community.
Share your story! Reach out to mythalassemiastory@agios.com.
What type of doctor treats thalassemia?
A hematologist is central to managing thalassemia. They are specialists in blood disorders or thalassemia, specifically. They monitor your blood health and transfusions and prescribe treatments like chelation therapy to manage iron overload.
Finding a hematologist you trust and being monitored regularly can help you feel confident that the complex needs of your thalassemia are being met.
It's important to find a hematologist to help manage your thalassemia—and a care team to help manage your overall health and well-being.
"I think it’s important to have a supportive medical team that is comprehensive and understands the condition and that you do the regular testing needed."
—Jesse, living with alpha-thalassemia
How to find a hematologist who suits you
Recommendations
Your primary care doctor or local patient advocacy groups can be excellent resources. Patients you connect with through community groups or online forums can also provide valuable insights.Expertise in thalassemia
Specialists with a focus on thalassemia or related anemias like sickle cell disease are more likely to be up to date on the new guidelines as well as research, treatments, and management strategies.Communication style
Choose a specialist who listens to your concerns, answers your questions clearly, and explains treatment options in understandable terms. A good doctor-patient relationship is based on open communication and mutual respect.Insurance and costs
Verify that the specialist accepts your health insurance plan. Understand any potential out-of-pocket costs for consultations, tests, and treatments.Ask questions
Prepare a list of questions to ask during your consultation. Inquire about their approach to treating thalassemia and how they coordinate care with other healthcare providers.
Credentials
Look up a doctor’s credentials, including education, training, and board certification in hematology.Hospital or clinic affiliations
Specialists affiliated with hospitals or clinics with a dedicated thalassemia or blood disorders department may be most appropriately equipped to offer services and support that you might need.Location and accessibility
It’s worthwhile to travel for expert care, but consider the feasibility of regular visits if the specialist is far away. Perhaps they offer telehealth appointments, which can be a great option for follow-up care.Schedule a consultation
Arrange a consultation appointment to meet the specialist in person. This visit can help you assess whether you feel comfortable with the doctor and confident in their ability to manage your care.
“I would encourage others living with thalassemia to rethink it and to become your own advocate with your doctors.”
—Mary Jo, living with beta-thalassemia
You may want to include some or all of these professionals in your healthcare team, as well:
Primary care physician (PCP)
Oversees your general health and can coordinate care between different specialists. They can also address non–thalassemia-related health issues, ensuring your overall well-being.Nutritionist
Proper nutrition is crucial for managing thalassemia. A nutritionist can recommend a thalassemia diet plan (for example, an anti-inflammatory diet) that addresses your specific health needs. including foods that can help maintain proper iron levels.Endocrinologist
Can manage issues like diabetes and thyroid problems.
Nurse specialist
Can provide day-to-day care and education, helping you manage your condition and treatment regimen.Cardiologist
Since thalassemia patients are at risk for heart-related issues, including iron overload affecting the heart, a cardiologist may be needed to monitor and manage your heart health.Psychologist/psychiatrist
Living with a chronic condition like thalassemia can be challenging. A mental health professional can offer support for your emotional well-being and suggest coping strategies.Physical therapist
If thalassemia affects your physical mobility or causes pain, a physical therapist can develop a tailored exercise program to improve your strength, flexibility, and overall physical function.
"I think the pivotal point for my life was when I first got to hold my niece. I wanted to be there for her. So I started taking my thalassemia care more seriously. It not only made a huge difference in my health but also in my perspective—I have a more positive outlook for my future now."
—Hardik, living with beta-thalassemia
Gather a circle of support among family, friends, and groups
Here are some organizations you can explore:
For Patients
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Get the latest thalassemia information and connect with a Clinical Nurse Educator.
Clinical Nurse Educators are employees of Agios Pharmaceuticals who work closely with individuals, families, and care teams to provide education, tools, and resources to support people living with thalassemia. They also provide opportunities to make connections with other others affected by thalassemia.
Clinical Nurse Educators do not provide medical advice. For medical advice or treatment-related questions, please talk to your healthcare team.
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References:
1. Baer K. A Guide to Living With Thalassemia. Cioffi G, Butler G, eds. New York: Cooley’s Anemia Foundation; 2013. Accessed April 1, 2024. https://thalassemia.org/updates/pdf/GuideToLivingWithThalassemia.pdf 2. Jadhav D, Agrawal P, Fernandes S, et al. Thalassemia: impact of physiotherapy. Pediatr Hematol Oncol J. 2018;3(suppl):S7-S65. 3. Primary care physician. Cleveland Clinic. Accessed March 28, 2024. https://my.clevelandclinic.org/health/articles/23467-primary-care-physician 4. Lewis S. 8 tips for choosing a hematologist. Healthgrades. May 11, 2020. Accessed March 28, 2024. https://www.healthgrades.com/right-care/blood-conditions/8-tips-for-choosing-a-hematologist