Actor portrayals. Inspired by real patient experiences.

LIVING WITH BETA-THALASSEMIA

COMPREHENSIVE
CARE

Everyone’s experience with beta (β)-thalassemia is different, including their goals and the level of support they may want or need. The following information may help you plan for the future, understand how to build a care team, and learn how to get the support that is right for you.

Long-term Goals

As you age, addressing all aspects of beta-thalassemia with your care team is essential.

Whether you need to make a change to your transfusion schedule, are considering other treatment options, or are reaching new milestones in life, it’s always a good opportunity to evaluate your long-term goals and discuss them with your doctor.

Here are some examples of when this might happen:

  • Changing schools
  • Participating in new sports or activities
  • Moving or changing primary hematologists (transitioning from pediatric to adult care)
  • Living away from home for the first time/going away to college and managing care without daily caregiver support
  • Starting a job or career and managing a full-time/regular schedule
  • Relationships and family planning
  • Taking care of others while taking care of yourself
  • Extended travel, time abroad, or immersive experiences

If you experience any of these things, bring them up at your annual comprehensive care visit.

Beta Thalassemia Goals Guide

Reach your treatment goals

The Goals Guide is a useful tool that can help you set short- and long-term goals to share with your care team.

Building Your Care Team

Comprehensive care for beta-thalassemia can mean different things to different people. A team of doctors can provide you with comprehensive care that monitors the symptoms and manages the complications of beta-thalassemia before they progress. Depending on your healthcare needs, your care team may include:

Example of specialists associated with comprehensive beta thalassemia care
Specializes in blood disorders like beta-thalassemia.
Specializes in heart conditions and diseases. When receiving blood transfusions for beta-thalassemia, an increase in iron can lead to cardiac complications.
Specializes in organs that make hormones. Similar to cardiologists, endocrinologists can help when there are hormonal complications caused by an increase of iron from blood transfusions.
Specializes in genetics. A genetic counselor can help you gain a deeper understanding of the genetics of beta-thalassemia and a child’s chance of inheriting the condition.
Specializes in emotional and mental needs. Beta-thalassemia can take a toll on mental health, and a mental health professional can help you better understand and cope with your thoughts and feelings.
Your care team may also include other healthcare providers such as a transplant specialist, a nutritionist, a transfusion nurse, a community health worker, and a fertility specialist.
Finding the right team of doctors at a practice or hospital may take time. You could start by finding a primary care physician (PCP) or hematologist who understands beta-thalassemia and with whom you feel comfortable. If you are struggling to find a PCP or hematologist who specializes in beta-thalassemia, reaching out to an advocacy organization (like Cooley's Anemia Foundation*) may be helpful. Once you find a PCP or hematologist you trust, ask them to help you fill out the rest of your care team.

*This advocacy organization is independent from bluebird bio, Inc. and is being shared as a resource only.

Caregiver Tip

You may also want to discuss with your doctor how you or your loved one can benefit from visiting a comprehensive care center. Once you have a care team in place, plan for at least 1 comprehensive care appointment every year.

Click the link below for a map of Cooley's Anemia Foundation select thalassemia treatment centers across the United States.

This external link is provided for informational purposes only and does not constitute medical advice.

Quote from Josephine, describing how talking about her condition makes her feel free

“It gives you so much more freedom when you’re being honest and not trying to hide the truth of your experience and who you are.”

Josephine

actual beta-thalassemia patient

Starting the conversation

Once you have decided what your long-term goals are, you can begin discussing them with your care team. Being open and honest about what you want to work toward will help them provide care that is right for you. It can also help your doctor determine if any adjustments can be made to your treatment plan so it better aligns with your long-term goals for managing your beta-thalassemia.

Assessing Care Over Time

If you and your doctor are not able to align on a path forward or you are just looking for different perspectives, you can seek the opinion of another doctor. Patient advocacy groups can help put you in touch with a new beta-thalassemia specialist. Remember, as your life changes, your needs may change as well. It's important that you feel you can trust your doctor with your health and personal goals.

Get the Support You Need

Managing beta-thalassemia on your own can be difficult. It’s good to remember you are not alone. Building a strong support team can help you gain the strength and confidence to face any obstacles that may arise.

As you build your personal support team, consider including different types of people and resources that can help you in unique ways:

  • Friends and family
  • Your nurse and/or doctor
  • A social worker or mental health professional
  • Thalassemia communities and organizations

Your friends and family

Your loved ones are there to help you in any way they can and are an important part of your support team.

Your doctors

Make sure you have the right doctors on your team. Your care team of doctors can include a hematologist, cardiologist, and more.

How to Ask for Help

There are times when you may be able to navigate your personal life, work, and treatment commitments without an issue. However, sometimes beta-thalassemia can make it challenging to manage day-to-day tasks.

Some people may find that their condition causes feelings of anger, shame, anxiety, or sadness. Sharing your thoughts and feelings with your support team can help you get the support you want.

Remember that it’s okay to ask for help; your support team is there for you every step of the way. You can ask them:

  • For a ride to a doctor’s appointment
  • To accompany you to a transfusion
  • To simply listen to how you’re feeling that day (physically or emotionally)

If you continue to experience feelings of distress or sadness, talk with your doctor or a specialist who can provide you with more support.

Explaining Beta Thalassemia Flashcard

Need help explaining the impact of TDT to others?

We’ve created an educational tool that you can share with others to teach them about beta-thalassemia and how it might affect you or your loved one’s daily life.