Advocating for yourself is learning how to speak up for yourself, to make your own decisions about your own life, and learning how to gather information. This will help you build understanding for your disease, identify who will support you in your journey, know your rights and responsibilities, and understand when you need to reach out to others for help and support. This is vital for individuals with rare diseases, including FCS, because of the lack of awareness of the disease and small patient populations who are affected. Becoming informed helps on your journey to become empowered, so you can participate in decisions that are being made about your life. Understanding your disease also will help you to articulate and explain your condition to family; friends and co-workers. What and how much you decide to share is a personal decision.
Become an Empowered FCS Patient
The most important thing you can do to help ensure you understand FCS and are aware of all of its symptoms and treatment options is to become an expert on your disease. Learn everything you can about your illness and seek out connections with other patients and patient advocates in the community. Keep a detailed record of your symptoms and questions. Having this record, will help you build an effective relationship and dialog with your physician and take an active role in decisions regarding your treatment. Global Genes has produced a Medical Care Notebook Toolkit that you may find helpful when organizing your medical life.
Another advantage to organizing your medical information is to be prepared to share information about your disease and medications you or your loved one may be taking, so that you can be prepared to easily share this with healthcare professionals in the event of an emergency room visit. Having a one-page description of FCS, and other important components of your health story, is essential to help ensure you are receiving the best and most appropriate care. It also may be helpful to include information about clinical studies and research collected from www.clinicaltrials.gov in your Care Notebook given how rare the disease is and the likelihood that physicians may not have this information readily available during your office or hospital visit.
Seek Out News and Information
Being informed means patients should conduct research regularly to learn which companies are conducting research into FCS, so that you can get the latest in information about the disease. Some will allow you to sign up to receive information updates via email, which patients can decide to opt into, or will post information about new research studies on their pages.