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7 Questions For People With Thalassemia To Ask Their Doctors

Whether you’re a kid who’s unsure about what exactly beta thalassemia treatment entails, a young adult who’s taking control of your own care for the first time, or you just don’t feel as educated about your health plan as you wish you did, it’s important to keep asking your doctor questions. Based on my experience, doctors don’t always realize when they’re being unclear or leaving out important information, so it’s up to you to clarify. But sometimes, it can be hard to come up with questions when you’re sitting in the exam room. People with beta thalassemia face a lifetime of doctor’s appointments and medical treatments, so it’s crucial to maintain open communication with your entire health care team. Beta thalassemia is a genetic blood disease that causes your body to produce little or no β-globin, a component of an oxygen-carrying protein called hemoglobin. As a result, your red blood cells are unable to carry oxygen to the rest of your cells, causing anemia and symptoms like weakness, fatigue and pain. Severe beta thalassemia is typically treated with blood transfusions every two to five weeks. It’s typically diagnosed in early childhood. To help identify which questions should be on every patient’s’ list, we asked two beta thalassemia patient advocates, Josephine Bila and Yasmeen Anis, to share the questions they recommend everyone living with beta thal asks their doctors. These questions can help you understand your treatment options and build a plan that works with your lifestyle. You deserve to feel empowered when it comes to your health. 1. “What are your transfusion protocols?” Not all doctors follow the same procedures when it comes to blood transfusions, which is a required treatment for many with beta thalassemia . Different doctors and treatment centers have different transfusion protocols, so it’s important for you to know exactly what your doctor’s procedure is and how that might affect your body. “I have seen doctors transfuse if your hemoglobin falls below 10 g/dL, most transfuse if you drop below 8 g/dL or 7 g/dL, and each transfuse different amounts of blood based on those levels. As someone with thalassemia , you must make sure that your doctor is willing to listen to you and what your body needs,” Anis said. 2. “Can you tell me the difference between the different chelation options available to thalassemia patients? How is each drug taken?” Blood transfusions increase the amount of iron in your body, which is toxic to your organs. So chelation therapy, which removes excess iron from your body, is an essential part of beta thalassemia treatment as well. There are many different kinds of medicines that can be taken in different ways (for example, as a pill or as an intravenous infusion), so before settling on which type of chelation therapy you will do, make sure you understand all your options. “Each type of medicine is taken differently and absorbed by the body in different ways, so it’s good to ask questions about which medicine is best for your health needs,” Bila recommended. 3. “How do I get approved for disability benefits?” Beta thalassemia and its treatment can impact your ability to work. Symptoms like pain and fatigue can make it physically difficult for you to do your job. Then, you might have to take time off work to go to your doctor’s office for blood transfusions, or you might be required to do chelation therapy via an IV infusion at home. As a result, you may qualify for disability benefits and/or accommodations at your job. Your doctor should be able to help you go through this process, or point you to other resources that can help you. “Inquire about if your doctor is familiar with how to help you get approved for benefits from the Family Medical Leave Act (FMLA) and if they can help you fill out the paperwork, which could provide assistance with you and your job,” Anis recommended. 4. “What are my options for comprehensive care?” Beta thalassemia affects your whole body; for example, iron can build up in the liver, heart, pancreas, and other organs. Your doctor should be monitoring all your body systems, not just your hemoglobin levels. Anis recommended getting a T2* MRI, which is a special type of MRI that measures how much iron is in your organs (you can search for a facility that performs T2* MRIs here ), and talk to your hematologist about other ways of checking your iron levels. “Most hematologists are not too familiar with thalassemia , so they may not be fully aware of how thalassemia affects the entire body,” Anis explained. “By getting comprehensive care, you can fully manage your healthcare with thalassemia .” 5. “Do you have a social worker on staff? Can I have their name and number or email address in order to get in touch with them?” Many people don’t realize that medical centers often have social workers available who can help you navigate the resources available to you. A social worker can help you find support groups, therapists, and just be a second set of ears during your appointments. “ Thalassemia comes with enormous emotional baggage, so it’s important to have an open dialogue with an expert about your mental health needs,” Bila said. “Social workers are also adept in connecting you with various wellness programs run by the hospital or other disease -related nonprofits. Take advantage of your social worker’s empathy, knowledge, and network.” 6. “Is it OK to take supplements? Can I take magnesium and zinc at the same time as my chelation medicine?” Vitamins and supplements may not seem like “medications” per se, but they can absolutely interact with other medications you’re taking and cause dangerous side effects. Be sure to ask your doctor about taking vitamin and mineral supplements before starting them. “Patients should be as serious about supplementation consumption as they are about prescription drug use. Always keep your doctor informed about your use of supplements and/or changes to your supplement regime,” Bila recommended. 7. “How can I balance treatment with my job/personal life?” Beta thalassemia can be, in short, a lot of work. You have to go to frequent doctor’s appointments (and you can’t blow them off if you’re busy without your health suffering), juggle multiple medications, and constantly communicate with your insurance provider. That’s on top of everyday aspects of life like a job, friends and family. It’s OK to talk with your doctor about other responsibilities you have and work with them to create a treatment plan that works with your life. “Today, most people with thalassemia are healthy enough to have full time jobs and families, all while managing their healthcare,” Anis said. “However, it is easier said than done.” For more insight on beta thalassemia , check out these stories from our Mighty community: 5 Lessons That Helped Me Start ‘Adulting’ With Illness Why Thalassemia Is My Worst Enemy and Best Friend

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