Hi, I’m Alia 

I'm Alia, I am passionate about raising awareness for mitochondrial disease, particularly Kearns–Sayre syndrome (KSS), which has been a part of my life since childhood. Living with KSS, a rare disorder affecting multiple bodily systems due to mitochondrial DNA deletions, has taught me resilience and a deep understanding of managing its diverse symptoms.  These include muscle weakness and vision impairments to neurological challenges and chronic fatigue. Through sharing my journey, I aim to shed light on mitochondrial diseases, advocate for those impacted, and contribute to a supportive community of awareness and understanding.