When life delivers the unexpected, some crumble — and others create change.
For Lea Jabre Fayad, a writer and nonprofit professional turned advocate, a diagnosis of Stiff Person Syndrome (SPS) — a rare neurological autoimmune disorder — did more than alter her life. It ignited a mission.

Today, through her platform Bent Not Broken, Lea transforms her pain into purpose, helping others find light in the shadows of chronic illness.

The Early Chapters: A Voice in the Making

Long before advocacy found her, Lea was already drawn to words. As a student in London, she immersed herself in literature and publishing — places where stories were born and shaped. Her early internships at publishing houses weren’t just professional milestones; they were lessons in empathy and expression.

She discovered how powerful a well-told story could be — how it could shift minds, stir emotion, and even spark change. That belief would become her compass in the years to come.

After completing her studies, Lea transitioned into nonprofit work, managing projects dedicated to supporting children and people with disabilities. She thrived in environments where compassion met action. Yet nothing could prepare her for the health battle that would soon redefine her life.

When the Body Says “Stop”

Lea began experiencing unexplained symptoms in 2016 — intense muscle rigidity, spasms, and debilitating pain. After a long search for a diagnosis, she finally learned in May 2021 that she had Stiff Person Syndrome. SPS is a rare autoimmune condition affecting fewer than one in a million people worldwide. It disrupts the body’s ability to control muscle movement, often leading to severe pain, immobility, and anxiety.

For Lea, it meant leaving behind the structure of office life — and facing a future filled with uncertainty. She quit her old job in December 2023. In February 2024, she survived a severe septic shock that could have ended her life.

“I had to grieve the version of myself that I thought I’d always be,” she once reflected. “But slowly, I realized that my voice could still matter — just in a different way.”

In January 2025, Lea survived a cardiopulmonary arrest in Baltimore — the night before she was meant to travel back home after her check-ups at Johns Hopkins — a true miracle.

 

Bent Not Broken: The Power of Storytelling

Out of that realization came Bent Not Broken, a digital advocacy and storytelling platform dedicated to rare disease awareness and chronic illness advocacy, which Lea created in October 2022.

Through personal essays, social media campaigns, and a heartfelt video series called Heart to Heart, Lea and her friend Ilea share unfiltered conversations about living with SPS and other autoimmune disorders.

The series doesn’t shy away from the hard truths — the fear, the fatigue, the frustration — but it also celebrates hope. Viewers around the world have connected to its honesty. Lea’s willingness to be vulnerable gives others permission to be seen.

“Being bent is not the same as being broken,” Lea often says — a mantra that has resonated across patient communities and inspired countless others facing invisible illnesses.

Work Reimagined: Purpose Beyond the Office Walls

When her health made traditional work impossible, Lea turned to what many people now recognize as the future — remote work.

Working from home allowed her to continue doing what she loved: helping others. She now serves as Fundraising and Communications Manager at Reddo Care, a UK-based nonprofit dedicated to breaking cycles of child neglect and abuse.

In parallel, she co-founded Boukra Nour (“Tomorrow’s Light”), a Lebanese NGO that supports youth empowerment and social inclusion. Both roles allow her to combine her skills in communication with her passion for impact — proving that physical limitations need not define professional potential.

“Remote work didn’t just give me flexibility,” she says. “It gave me freedom — the chance to live with purpose, at my own pace.”

A Global Voice for Rare Disease Awareness

Lea’s journey has made her one of the emerging global voices for rare disease advocacy. Through her social media presence and collaborations with organizations around the world, she is reshaping how people view chronic illness.

Her storytelling blends empathy with education. She advocates for:

• Early diagnosis and better research for rare diseases 
• Access to flexible, inclusive work for people with chronic health conditions 
• Greater emotional support for patients and caregivers 

Her message is clear: rare diseases may be uncommon, but the people who live with them deserve understanding, dignity, and visibility.

Resilience, Redefined

For Lea, resilience isn’t about pretending to be strong — it’s about accepting fragility and continuing anyway. She often speaks about the importance of mental health, faith, and community in the healing process.

“Every day, I choose to show up,” she says. “Some days that means writing. Some days it means resting. Both are valid.”

Her quiet honesty has earned her recognition in global health and media circles, but she remains grounded in her purpose — using her voice to light the way for others still navigating the darkness of uncertainty.

A Legacy of Light

Lea Jabre Fayad’s story is more than an account of survival; it’s a blueprint for turning hardship into healing. Her life reminds us that identity isn’t lost when illness enters the picture — it evolves.

Through Bent Not Broken, Heart to Heart, and her ongoing work with nonprofits, she continues to champion the idea that every story — no matter how painful — holds the potential to inspire change.

As she puts it:

“You don’t need to be cured to make a difference. You just need the courage to speak.”

Quick Facts About Lea Jabre Fayad

• Founder of Bent Not Broken, a rare disease and autoimmune advocacy platform 
• Host of Heart to Heart, a conversation series about life with chronic illness 
• Communications & Fundraising Manager at Reddo Care (UK) 
• Co-founder of Boukra Nour NGO in Lebanon 
• Advocate for remote work accessibility and chronic illness inclusion 
• Working on publishing a fiction novel and another on life lessons