About the Author

Susan S. is a scientist, stricken down in 2004 from the effects of Ehlers-Danlos Syndrome. Complications from this disease have affected many of her systems, including the central nervous system. Because connective tissues between her head and neck have dissolved, Susan S. suffers from functional cranial settling with idiopathic intracranial hypertension and a whole mess of transient symptoms including loss of vision, speech, hearing, and temperature regulation under some conditions, such as riding in a car. Susan still manages to stay active and enjoy life by riding a recumbent tricycle!

“… a research psychologist since the early 1980′s, most of my work has been in the area of physiology with an emphasis on statistical methodology. My publications primarily focused on physiological responses to different types of stress, but my dream was to research the specific effects of trauma on mental and physical health…. I was in the process of writing up my dream paper when I was stricken down.”

“One of the most useful tools I possess that helps my relationships with physicians is a 17-page document I created to introduce myself. It includes sections on my symptoms, allergies, medical history, medications, and future goals, amongst others. When I meet a new doctor and they tell me that they don’t have time to review my document, I leave. On the other hand, when I run across a doctor who becomes grateful and excited about my document, I know I have found a potentially helpful member of my medical team. I update this document frequently and have chosen to post excerpts here as examples of successful tools which aid us as medical consumers. If you also take comfort by spotting commonalities with your own condition, feel free to contact me if I can be of help to you. Best regards for courage to all in the face of pain, illness and despair……….”

……….Susan S.