When strength meets empathy, movements are born.
At the crossroads of pain and purpose stands Lea Jabre Fayad — writer, humanitarian, and founder of Bent Not Broken, an international platform reshaping conversations around chronic illness and rare diseases. Her journey, marked by resilience and reinvention, reminds us that when the body falters, the spirit can still lead.
Lea’s story is not merely one of survival; it’s an evolution — from facing one of the rarest autoimmune disorders in the world to transforming that challenge into a movement of visibility, awareness, and collective healing.
The Awakening of an Advocate
Born with a natural affinity for words, Lea’s early life was grounded in storytelling and service. Educated in London, she immersed herself in literature, publishing, and nonprofit work, always drawn to spaces where empathy met expression. Her professional path guided her toward initiatives supporting children and people with disabilities — a foreshadowing of her future mission to give voice to those living unseen battles.
But life’s turning points rarely announce themselves. When unexplained pain, spasms, and rigidity began to interfere with her daily rhythm, Lea’s journey took a turn she could never have imagined. After years of uncertainty, she received her diagnosis: Stiff Person Syndrome (SPS) — a condition so rare that it affects fewer than one in a million people.
The Diagnosis That Redefined Everything
SPS changed everything. Once an active professional immersed in organizational leadership and humanitarian projects, Lea suddenly found herself facing physical limitations that would have silenced most. Yet silence was never her language.
Instead of retreating, she chose to speak — and, through that decision, Bent Not Broken was born.
Created in 2022, the platform became a sanctuary for honesty, awareness, and connection. Through essays, digital storytelling, and social campaigns, Lea turned the spotlight on the realities of rare diseases — not as a plea for pity, but as a call for understanding.
“We do become bent,” she says, “but our spirits should not break.”
Bent Not Broken: Turning Vulnerability Into Visibility
At its core, Bent Not Broken is more than a movement — it’s a manifesto for humanity. The platform hosts Heart to Heart, a conversation series co-created with her friend Ilea, where raw dialogue replaces medical jargon. Together, they discuss everything from the fear of losing independence to the joy of rediscovering gratitude.
Their voices echo what millions of others living with invisible conditions feel daily — the need to be seen, not defined. This emotional authenticity has transformed Bent Not Broken into an online community for compassion, courage, and collective empowerment.
Reinventing Work, Redefining Worth
When her illness forced her to step away from conventional work, Lea didn’t stop contributing — she simply changed how. Today, she continues to serve humanity in a digital-first world, blending passion with practicality. As Fundraising and Communications Manager at Reddo Care (UK), she helps dismantle cycles of child neglect and abuse through advocacy, storytelling, and strategic communication.
Beyond that, she co-founded Boukra Nour (“Tomorrow’s Light”), a nonprofit in Lebanon that empowers youth and promotes inclusion. These dual paths represent her vision: that physical limitations should never limit purpose, impact, or leadership.
“Work is not a place,” Lea reflects. “It’s the energy we give to the world, even when we give it from bed.”
A Global Voice for Change
In a world that often romanticizes resilience, Lea redefines it as realism — showing up, even when it hurts. Her advocacy now extends beyond social media into global awareness campaigns, nonprofit collaborations, and educational outreach on chronic illness inclusion and currently collaborating with the Johns Hopkins Hospital – Stiff Person Syndrome Research Center to raise funds and awareness for critical rare-disease research.
Through her storytelling, she emphasizes that true empowerment comes not from perfection but from perseverance. Every post, every project, and every talk she leads reminds others that fragility and strength are not opposites — they coexist beautifully.
The Heart Behind the Healing
Lea’s quiet leadership and transparent communication style have made her a respected figure among advocates and health organizations worldwide. Yet what distinguishes her is not just what she’s overcome, but how she carries it — with grace, humor, and hope.
Her mantra “Bent, Not Broken” isn’t about denial; it’s about dignity. It honors the reality of pain while celebrating the possibility of light. Each time she shares her story, someone, somewhere, feels less alone.
The New Face of Resilience
As the global conversation around mental health and chronic illness evolves, voices like Lea’s are essential. She represents a new era of advocacy — digital, inclusive, and deeply personal. Her presence online and in the nonprofit sector continues to inspire both patients and professionals to think beyond labels and lean into empathy.
In every sense, Lea Jabre Fayad stands as a modern symbol of hope — a woman rebuilding the definition of strength one story at a time.
Fast Facts About Lea Jabre Fayad
- Founder of Bent Not Broken, an advocacy platform for rare and chronic illness awareness
- Host of Heart to Heart, a storytelling video series on life with invisible illness
- Fundraising & Communications Manager, Reddo Care (UK)
- Co-Founder of Boukra Nour, youth empowerment NGO in Lebanon
- Collaborating with Johns Hopkins Hospital – Stiff Person Syndrome Research Center to raise funds and awareness for vital rare-disease research
- Global advocate for chronic illness inclusion and mental-health awareness
- Currently writing two books — a fiction novel and another inspired by life lessons and resilience
