Have you been searching for answers from many physicians and caregivers? And have you been feeling frustrated and confused with the lack of answers? Then this toolkit is for you.
Being an empowered patient means taking an equal and active role in the care of yourself or a loved one, managing healthcare information, proactively researching and learning the most about the disease or condition, and seeking needed answers. Being equipped in this way can improve the chances of doctors listening and providing better care.
Having a rare or undiagnosed condition can be difficult. It is common to feel isolated, alone, afraid, anxious, and misunderstood. But when you seek help for the symptoms, and instead, leave the physician’s office feeling dismissed and patronized, those feelings can turn to hopelessness. The best protection against developing these feelings are well-kept medical records, patience, being organized, and the confidence to seek another opinion when you feel it’s required.
The goal of this toolkit is to move you from feeling afraid and anxious to feeling prepared, confident and educated on how to manage the next steps in your healthcare journey. It will outline many of the steps of becoming an empowered patient.
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