Patients’ Voices

“Patient Voices” is a dedicated space where patients can share their stories and make their voices heard. It is a place that highlights the real impact of rare metabolic disease on daily life — both the physical and the emotional aspects. Through personal testimonies, patients can express their challenges as well as the ways they have managed to overcome them, offering support and hope to others who are facing similar experiences. Every voice has the power to inspire and to comfort!
Contributions can take different forms, such as videos or written stories.

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Rare disease, chronic pain and mental health: a patient’s story

What happens when your body is under siege, but the world can’t see the battle? Living with Mitochondrial Encephalomyopathy with Lactic Acidosis and Stroke-like episodes (MELAS) syndrome means navigating a rare, often invisible disease that reshapes every aspect of life. This Global Mental Health Day (October 10), we’re honored to share a patient’s story in a new video, the final piece of a triptych exploring the intersection of chronic illness, pain, and mental well-being.

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Chronic Pain and Mitochondrial Disease: Nanda’s Story and Expert Insights

September shines a light on Mitochondrial Disease Awareness and Pain Awareness Month. Mitochondrial diseases impact around 1 in 5,000 individuals and often remain underdiagnosed and misunderstood. In recognition of Mitochondrial Disease Awareness Week (September 15–21) and Pain Awareness Month, we celebrate resilience by sharing an inspiring patient story alongside an expert-led presentation focused on chronic pain management.

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