Standing Up For Your Health means being a strong self-advocate and an empowered patient. It means taking a more active role in your care to ensure you or your loved one receive the best care and treatment available.
Why is Self-Advocacy Important to Patients with Rare Diseases?
Self-advocacy implies that a person makes an informed decision about a matter of importance to her or him and then takes responsibility for bringing about the change necessary to make that choice a reality. Self-advocacy is a necessity of patients with chronic rare diseases like aplastic anemia, MDS, and PNH.
Our research has shown that there is a set of activities and skills that empowered patients and strong self-advocates use. We call these the Five Principles of Standing Up for Your Health. These are the essential skills to have if you are to receive your best care and treatment. These are the things that empowered patients and strong self-advocates do.
Building a strong healthcare team is critical part of standing up for your health. Your team should include skilled healthcare providers whom you trust and can talk openly with. It should also include an expert in your disease. This gives you the best chance of being an active participant in your care. Learn more about how to build your strong healthcare team.
Although a diagnosis of bone marrow failure disease is an unwelcome life event, strong self-advocates remain curious and challenge themselves to know what is really happening in their body. They become familiar with their disease and treatment options. They stay up-to-date on progress in the field. Standing Up for Your Health means you know where and how to find resources for help, including the many resources provided by AA&MDSIF. Learn more about how you can become more educated about your disease and treatment options.
Strong self-advocates prepare for each doctor visit and make the most of the limited time they have with their doctor or other healthcare provider. This includes making a prioritized list of questions, asking the most important questions first, and being sure to receive answers they understand. Learn more about how you can make the most of ever office visit.
This includes your health history, test results, and treatment information. Keep this information well-organized, easily accessible, and bring it with you to your office visits. Learn more.
Your team can be family members, friends, or professional caregivers. A support team helps you manage the tasks of daily life, provides emotional support, and assists you in understanding and tracking your health information. A support team also helps you in making the most of office visits by being sure all information discussed and answers given are captured. Learn more.