top of page

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. 

profile
Spreading Awareness

Spreading Awareness

Mitochondrial diseases, like KSS, stem from mitochondrial DNA defects impacting energy production and bodily functions. I share my journey to educate, advocate for early diagnosis, and support research for treatments and cures.

Advocacy and Support

Advocacy and Support

​As an advocate, I foster a supportive community for those affected by KSS and related conditions, promoting education, empowerment, and solidarity.

Living with Purpose

Living with Purpose

Living with KSS has taught me resilience and determination. I aim to inspire others to embrace positivity and live purposefully beyond their diagnosis.

I'd Love to Hear From You. You can contact me here: 

bottom of page