What are the Challenges of Living with Mitochondrial Disease?

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• Mitochondrial disease can affect multiple organs, multiple family members, and multiple generations.

• Lack of awareness and understanding of the disease can delay treatment and diagnosis.

• Families are continuously forced to expend energy to explain their disease, advocate for themselves, and fight for services.

• Mitochondrial disease is often an “invisible disease.” On a good day, a patient may look fine and healthy, with more energy and appear rested. But on a bad day, patients can appear tired or even significantly ill. Repeated bad days may lead to decompensation and patients may have difficulty returning to baseline.

• Mitochondrial disease is unpredictable. Symptoms can vary day to day or even hour to hour.

• Mitochondrial disease is difficult to diagnose. Difficulties establishing a diagnosis interfere with a patient’s ability to obtain adequate recognition and appropriate medical care. 

• An individual can become symptomatic at any time in life despite the fact that mitochondrial dis- ease is inherited.

To connect with others facing the challenges of mitochondrial disease, visit the MitoAction closed Facebook group or join our weekly support teleconferences.