By [STRIVE TIMES US]
In a world where chronic illness often silences voices, Lea Jabre Fayad has turned her pain into purpose. The 38-year-old Franco-Lebanese writer, advocate, and nonprofit leader has transformed her personal battle with Stiff Person Syndrome (SPS) into a global movement for awareness and empowerment.
“I had to grieve the version of myself that I thought I’d always be,” Lea shares — a reflection that captures both the heartbreak and rebirth of her journey.
A Life Across Continents and Causes
Born to a Franco-Lebanese family, Lea grew up between France and Spain, later studying at University College London (UCL), where her love for words took root. Published in current affairs magazines specializing in the MENA region, she began her career in journalism before transitioning into political analysis.
But her true calling emerged in nonprofit work, where she became Director of an NGO supporting individuals with special needs, leading initiatives focused on inclusion and awareness.
“Helping others has always been my compass,” she explains. “Even when my body began to fail me, that purpose didn’t. It only changed shape.”
A Search for Answers: The Road to Diagnosis
Lea’s health journey began in late 2016, when she started experiencing unexplained muscle rigidity, spasms, and chronic pain. Initially diagnosed with Dysautonomia, her symptoms worsened over the years, leading to a long and painful search for answers.
In May 2021, she finally received her diagnosis — Stiff Person Syndrome (SPS), a rare autoimmune neurological disorder affecting fewer than one in a million people worldwide. SPS causes severe muscle stiffness, spasms, and sensitivity to stimuli such as bright lights or loud sounds.
“SPS did much more than change my life — it transformed it,” Lea says. “I became an advocate almost by accident, but it was the most natural thing I could have done.”
The Birth of Bent Not Broken
Following a viral video documenting her journey toward diagnosis, Lea launched Bent Not Broken in October 2022 on Instagram. What began as a space for others to share their rare disease stories soon evolved into a digital advocacy and storytelling platform dedicated to chronic illness awareness.
The name, Bent Not Broken, became her mantra.
“I may be bent because of my disease, but my spirit will never be broken,” she says — words that have resonated deeply with thousands facing invisible illnesses.
A year later, Lea expanded her mission through YouTube, co-creating Living with Stiff Person Syndrome – Heart to Heart Conversations alongside her close friend and fellow advocate, Dr. Ilea Khan. The series offers honest, unfiltered dialogues about life with chronic illness — from fear and frustration to faith and resilience.
“We don’t sugarcoat it,” Lea notes. “There are tears and laughter in equal measure. But it’s real — and that’s what connects people.”
Trials, Triumphs, and True Resilience
Lea’s journey hasn’t been without its battles. In February 2024, she survived a severe septic shock, and in January 2025, she went into cardiac pulmonary arrest in Baltimore — just a day before returning home from medical checkups at Johns Hopkins.
“I do believe I am a true miracle,” she says softly. Since then, she has also been diagnosed with Rheumatoid Arthritis, another autoimmune condition — yet her determination has only grown stronger.
When her health made traditional work impossible, Lea adapted. She embraced remote work, becoming Fundraising and Communications Manager at Reddo Care, a UK-based nonprofit tackling child neglect and abuse.
“Remote work didn’t just give me flexibility,” she reflects. “It gave me freedom — the chance to live with purpose, at my own pace.”
New Horizons: Boukra Nour and Beyond
Lea’s compassion has also inspired new initiatives closer to home. She is co-founding Boukra Nour (“Tomorrow’s Light”), a Lebanese NGO set to launch at the end of the year. The organization will focus on empowering vulnerable communities and supporting those affected by rare diseases and chronic illness.
At the same time, she continues to nurture her love for writing and music, working on two manuscripts she hopes to publish. “Words saved me,” she admits. “Writing helps me process pain — and transform it into something meaningful.”
A Global Voice for Rare Disease Awareness
Through Bent Not Broken and Heart to Heart, Lea has emerged as one of the most authentic global voices for rare disease advocacy. Her online community has become a lifeline for countless individuals navigating similar challenges.
Her message is simple yet profound:
“Resilience isn’t about pretending to be strong — it’s about accepting fragility and continuing anyway.”
Lighting the Way Forward
Today, Lea Jabre Fayad stands as a beacon of strength and compassion, her story reminding the world that identity doesn’t vanish with illness — it evolves.
“Every day, I choose to show up,” she says. “Not because it’s easy, but because someone else might need to see that it’s possible.”
From her home in Lebanon to the screens of people around the globe, Lea continues to live her mantra — bent, not broken — inspiring a movement built on empathy, courage, and hope.