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.