What is Epithelioid Sarcoma, rare cancer that finally claimed Leila Janah's life

  • Leila Janah, employed thousands of desperately poor people in Africa and India

  • She passed away on January 23

Leila Janah, a social startup entrepreneur who worked tirelessly for uplifting thousands of those living in poverty by providing employment passed away due to complications from Epithelioid Sarcoma, a rare form of cancer. She was 37 years old.

Epithelioid sarcoma is a rare type of cancer that grows slowly in the soft tissue, that usually begins under the skin of a finger, hand, forearm, lower leg or foot, though it can start in other areas of the body.

The classic form of the disease occurs in young adults, while a more aggressive, fast-growing form of the illness occurs more frequently in adults.

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Leila Janah passed away on January 23 mere days after the US Food and Drug Administration granted accelerated approval to Tazverik (Tazemetostat) for treating this rare cancer.

"It has been a longstanding challenge for children and young adults with rare cancers to have access to promising new agents," Dr. Elizabeth Raetz, director of pediatric hematology and oncology at Perlmutter Cancer Center, told SurvivorNet. "It's really exciting that they've developed this drug."

In a November Facebook post, Janah wrote, "Epithelioid sarcoma is a rare, strange beast. As it moves through my body I'm trying to understand what it could possibly teach me. My biggest lesson is awe: I'm awe-struck by the complexity of human biology, and equally by the almost mystical power of human connection and love flowing my way."

The rare cancer, however, is still untreatable. As there is a high likelihood of the local and regional spread of the disease even with treatment and approximately 50% of patients have metastatic disease at the time of diagnosis, FDA said in a statement. Metastatic disease is considered life-threatening to the patient.

In a statement, the company that founded - Samasource said: "Leila spearheaded a global impact sourcing movement and was a champion for environmental sustainability and ending global poverty."

Child of Indian immigrant parents, Leila believed in the dignity of labor, she once famously said: "Handouts are not going to end global poverty. But work–dignified, living wage work–just might."

And it was this belief that took her on the path of founding three organizations, all with a common mission to "Give Work" - Samasource, a global for-profit technology leader in training data for AI; LXMI, a fair-trade, organic skincare company; and Samaschool, a non-profit focused on reskilling for the new economy.