Mito Community Voices: How Do You Describe Mitochondrial Disease?

Category: Advocacy, Caregiver Stories, Patient Stories
By: admin Date: October 29, 2019

Welcome to our video series, “Mito Community Voices.” The Charge sat down with patients, caregivers and advocates to learn what life with mitochondrial disease is like. First up – defining mitochondrial disease.

Getting a mitochondrial disease diagnosis involves multiple doctor visits and tests. It can often take years of visiting specialists and discussing various symptoms before finally reaching a diagnosis.1

Describing what it feels like to live with mitochondrial disease can be challenging for those who are not directly affected by the disorder. Mito warriors Lisa Thompson, Heather Schichtel, Sheridan Johnston and Kristy Garrigus describe mitochondrial disease in their own words.


Ref 1. Johnston Grier-Michio Hirano-Amel Karaa-Emma Shepard-John Thompson –

What Are Mitochondria?

Have you ever wondered how your heart has the energy to beat all day, every day, for a lifetime? The answer lies in mitochondria. These microscopic factories make 90 percent of the energy that powers the cells and organs keeping you alive. Although nearly all cells rely on mitochondria for energy, some need more than others to perform jobs like thinking, seeing, pumping the heart, contracting muscles and filtering waste from blood. That’s why the brain, eyes, heart, skeletal muscles and kidneys generally have a lot of mitochondria.

Learn More About Mitochondria