LIVING WITH BETA-THALASSEMIA
Caring for Someone Living with Beta-Thalassemia
Caregivers play a critical role in the lives of those living with beta (β)-thalassemia. Because beta-thalassemia is a lifelong condition that affects people from childhood through adulthood, you and your loved one’s doctor may need to consider their future healthcare needs starting at a young age. This includes ongoing conversations that evaluate how regular red blood cell transfusions impact your loved one’s life and their overall health.
Start the Conversation
As a caregiver to someone with beta-thalassemia, it may be hard to know whether or not your loved one’s treatment plan is working for them. It may be helpful to discuss how they feel about the potential impact and long-term risks associated with beta-thalassemia. Having candid conversations with them and with their doctor can help you collectively manage expectations, set goals, and make more informed treatment decisions.
Consider your answers to the following lifestyle questions and share them with their doctor:
- How has my loved one’s beta-thalassemia and/or regular red blood cell transfusions impacted their performance at work or school?
- How has my loved one’s beta-thalassemia and/or regular red blood cell transfusions impacted their ability to participate in certain activities or sports?
- How has my loved one’s beta-thalassemia and/or regular red blood cell transfusions affected their ability to travel?
- Overall, do I feel that my loved one’s beta-thalassemia and regular red blood cell transfusions have caused them to miss out on small or big things in life?
- How should I talk to my loved one's teachers and our friends and family about beta-thalassemia?
To help evaluate their overall health, ask your doctor about the following:
- How have regular red blood cell transfusions impacted my loved one’s health so far?
- How do you expect regular red blood cell transfusions to impact my loved one’s health in 5 years? 10 years? And 20 years?
- Is my loved one currently eligible for any advanced treatment options?
- Do you recommend I consider an advanced treatment option for my loved one?
Based on this conversation, you and your doctor can work on a shared set of goals and a long-term treatment plan to help manage your loved one’s overall health. This may include a plan to discuss novel and advanced therapies.
Managing Your Loved One's Health
Download the Understanding Beta-Thalassemia brochure to access these questions for your loved one's next doctor's visit. See pages 26 and 27 for more information on getting the right care for your loved one.
A caregiver’s commitment
Pushpinder has made her daughter Rammeet’s beta-thalassemia treatment and well-being her priority since Rammeet’s diagnosis. Learn how Pushpinder helped manage her daughter’s condition throughout the years.
“It’s very difficult, but we manage it. We are very happy together and we are very lucky.”
actual beta-thalassemia caregiver, mother of Rammeet