Mito Community Voices: Living with a Mitochondrial Disease

Category: Advocacy, Caregiver Stories, Patient Stories
By: admin Date: October 30, 2019

Welcome back to our video series, “Mito Community Voices.” The Charge sat down patients, caregivers and advocates to learn what life with mitochondrial disease is like. Up next – living with a mitochondrial disease.

Mitochondrial diseases are rare, and symptoms are varied and often mistaken for those of more common conditions.1Furthermore, a general lack of awareness can make it challenging for patients, caregivers and advocates to explain the condition to others.

From Barth syndrome to Leber’s Hereditary Optic Neuropathy (LHON), LHON Plus, Primary Mitochondrial Myopathy (PMM) and more, Mito Warriors Kristy Garrigus, Sheridan Johnston, Shelley Bowen, John Knox and Lisa Thompson share what living with mitochondrial disease is like and explain some of the common misconceptions they have encountered.


Ref 1. Children’s Hospital of Philadelphia. Mitochondrial Disease. Accessed July 2019:

Diagnosing Mitochondrial Disease

Reaching a mitochondrial disease diagnosis can be a harrowing odyssey. People often shuttle between doctors, struggling with mysterious symptoms, uncertainty, anxiety and misinformation for years before finally getting a satisfying explanation for what is going on. A recent study found that patients saw an average of eight different clinicians before finally being diagnosed with a mitochondrial disease.

Learn About Mitochondrial Disease