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Symptom Guide for Clinicians
MitoAction gratefully acknowledges the
support of Edison Pharma for this project.
DEDICATION AND COMMENT
Floating Hospital for Children at Tufts Medical Center
This guide is dedicated to the patients and families who are our teachers and inspiration.
This manual is dedicated to our patients and families who are also our teachers and our inspiration. Funded by MitoAction over the last three years, thank you for enabling us to be able to bridge the gap in care and understanding of symptom management between us, our patients, and their primary care providers.
The community of Mito patients is terribly under-recognized and underserved. There are simply not enough clinicians aware of mitochondrial disease, or who will play an active role in the care of these patients. As a result, it is too often the patient or the family member who becomes the de facto primary care provider.
This manual was written to provide concise, clinically-relevant background information about mitochondrial disease in general. Its primary target includes general providers and non-genetic specialists who may be following one or more patients with energy disorders but who have no background in mitochondrial medicine. When these clinicians hear about patient concerns, the knee-jerk response is frequently, "call your mitochondrial specialist!" It is our hope that this manual provides a way of thinking about some of the more common symptoms mitochondrial patients develop so that non-mitochondrial clinicians can play a more active role in their care.
The manual is not intended as a detailed source of information, and so does not replace the need for having a physician skilled in mitochondrial medicine to be involved in a patient's care.