Building a strong health care team you trust and can talk to freely is one of the ways to become a stronger self-advocate. You need to feel comfortable with the experts you're relying on. In addition to providing answers to all of your questions, your team needs to spend time listening to the concerns you and your family have.
It's important to stay well-informed about your disease and treatment options. That's how you develop strong input with your health care team and help educate your family and friends. The knowledge will also contribute to making informed choices as you better understand your treatments and progress.
Have you ever left your doctor's office unsure about what to do next or how you're supposed to take your medicine? You're not alone. It's easy to become distracted or confused when you're not feeling well, but you still need to absorb a lot of information at medical appointments. Here are some guidelines to help you get the most value from your doctor visits.
Keeping track of your medical records and health information can be quite a task. Yet being able to put your hands on paperwork you need within minutes can be extremely helpful as you prepare for a medical appointment or advocate for your health. It also helps you know how your disease is progressing and how well your treatment is working.
For many of us, asking for help does not come naturally. But for patients to become empowered, they need to recognize the value of having other people step in to help them. That additional advocacy increases a patient's chances of getting the health care services and treatment they need when they need it. It also provides another layer of solace and support.
Why is it important to take control of your care?
By following simple guidelines above, you are more likely to:
- Get high-quality care. High quality care means getting the right care at the right time delivered by the right healthcare professional for you.
- Feel more in control. At times you may feel like your disease is running your life. Taking charge of your care gives you back a sense of control. When you stand up for your health, you can get the information you need to make informed choices about your medical treatment and your healthcare providers.
- Find the support you need. When take charge of your health health, you ask for help from family, friends, and others. Their support can help you cope with your disease.
Find a Specialist
It’s important for patients to seek consultation with physicians who have experience working with bone marrow failure disease. We’ve developed an interactive map of physician specialists in bone marrow failure disease who have worked with AAMDSIF in a significant way as speakers, writers, editors, and/or advisors. This map will allow you to search for physicians in your area by location using the zoom-in feature, by zip code, or by disease area utilizing the dropdowns menus. Please click here for more information.