Symptoms Associated with Dysautonomia in Patients with Primary Mitochondrial Disease: DySSy Survey

The presentation by Dr. Jeffrey Boris at the Johns Hopkins POTS Grand Rounds discusses the DySSy (Dysautonomia Symptom Survey) used to evaluate symptoms of autonomic dysfunction in patients with primary mitochondrial disease (PMD). The survey included children and adults with confirmed or suspected PMD and assessed the frequency and severity of symptoms like exercise intolerance, brain fog, pain, and gastrointestinal issues. Results showed differences in symptom reporting between pediatric and adult patients, with adults experiencing more symptoms, especially pain and orthostatic issues. Interestingly, patients without confirmed PMD reported more symptoms than those with confirmed PMD. The study emphasizes recognizing and validating these symptoms, as they impact patients’ quality of life, and highlights the need for effective management strategies, including both pharmacological and non-pharmacological approaches.