From Crisis to Calling: How Remote Work Helped Lea Fayad Rebuild Her Career with Purpose

When Lea Fayad stepped down from her role as the Director of an NGO in 2023, it wasn’t part of a planned transition. It was survival. Diagnosed with Stiff Person Syndrome (SPS) – a rare, neurodegenerative, autoimmune condition – her professional path was suddenly and forcefully altered.

SPS is often misunderstood. Despite being labeled an “invisible disease,” it can cause very visible, very painful symptoms. In Lea’s case, her form of SPS is aggressive. It has affected her mobility, posture, and independence in serious ways. She now lives with displaced hips, damage to her coccyx and tailbone, and weakened knees and ankles. One of her feet is extremely stiff, while the other tends to turn sideways involuntarily, making standard footwear nearly impossible. She relies on trainers or sandals that secure the ankle.

But what’s even harder than the physical symptoms is trying to explain them to others. SPS can cause hypersensitivity to light, sound, and touch. Lea experiences this acutely – she wears shaded glasses and noise-cancelling plugs to manage daily life.

The disease also triggers a wide range of spasms. Some are minor and frequent, causing ongoing stiffness. Others are severe and dangerous: full-body spasms that can contort the body, twist toes over each other, and cause arching backward or falls – often referred to as “tin man” falls. These spasms have led to serious injuries for Lea, and navigating stairs or walking more than 200 meters outdoors requires a cane and often assistance.

Even strong emotions, stress, or illness can worsen the symptoms.

Despite all of this, Lea didn’t give up. She adapted. She moved into remote work, a decision that offered her not only flexibility, but a renewed sense of purpose.

She now serves as Fundraising and Communications Manager at Reddo Care, a nonprofit in the UK focused on child protection and welfare. From her home, she helps drive campaigns, connect with donors, and build outreach strategies to support children across London boroughs. Her personal experiences make her deeply empathetic to the mission.

She has also co-founded a new NGO in Lebanon called Boukra Nour – meaning “Tomorrow’s Light.” Built in partnership with Reddo, the initiative is dedicated to helping young people and children create more inclusive and supportive communities.

“Remote work allowed me to stay useful, even when my body was fighting against me,” she says.

While many people see remote work as a convenience, for Lea and others with chronic conditions, it can be the difference between isolation and impact.

Lea’s journey is a strong reminder that illness doesn’t define worth. She continues to write, create, and advocate—most notably through her Instagram page @bent_not_broken_autoimmune, which has become a vital part of her mission to raise awareness about SPS and its real-world impact. Through this platform, she hopes to educate and inspire, addressing a gap she feels still exists in both the medical field and broader public understanding.

“There’s a whole life beyond a diagnosis,” she says. “But for that life to be lived, people need to understand what we’re going through.”