Amyloidosis from the Patient’s Perspective

Abstract

The information and views presented in this chapter are derived from e-mail and personal contacts with members of the Amyloidosis Support Groups, Inc. (ASG), an association of patient support groups from the United States, Canada, and Mexico. Despite its corporate status, this is a not-for-profit entity whose primary purpose is to offer education, advocacy, and support to patients who, for the first time, are confronted by a diagnosis of amyloidosis. Being a support advocacy group, we strive to stay current with the latest developments, and to maintain contacts with amyloidosis experts at centers specializing in its treatment. We have a medical advisory board to answer the medical questions that constantly arise from our online group sessions and face-to-face meetings. Amyloidosis is a rare disease, and therefore, not unexpectedly, many physicians may lack extensive firsthand experience of its diagnosis and treatment. It is extremely important to screen for amyloidosis in order to detect it at an early stage among the many patients who present with similar symptoms and to identify those who have, or may be suspected of having, the disease. A proactive approach to the diagnosis of amyloidosis is needed from all physicians, general practitioners, specialists, and pathologists.