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Entrepreneur Leila Janah died from complications of epithelioid sarcoma. Here’s what that is

Leila Janah, a fierce entrepreneur who worked to help those living below the poverty line, died in January from complications of epithelioid sarcoma — a form of cancer.

She was 37.

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.”

Epithelioid sarcoma is a rare soft-tissue cancer often seen in young adults, according to the Food and Drug Administration.

“Epithelioid sarcoma accounts for less than one percent of all soft tissue sarcomas,” said Dr. Richard Pazdur, director of the FDA’s Oncology Center of Excellence.

In a statement last month, the agency announced it approved the first ever treatment option for the specific form of cancer.

Typically starts in extremities

In many cases, the cancer begins in soft tissue under extremities — usually fingers, hands or forearms. It typically starts off as a painless and often small bump.

“It usually starts out as a single growth, but multiple growths may occur by the time a person seeks medical help. Sometimes this sarcoma appears as ulcers that don’t heal, looking like open wounds over the growths,” the Mayo Clinic says.

But because of its often benign look in the early stages, it may take patients months to years before seeking treatment, according to a 2009 report in the Journal of Clinical and Aesthetic Dermatology.

“Because of its potential for aggressive behavior, clinicians must be aware of the presenting behavior of ES in order to avoid misdiagnosis. Unusual nodules, particularly on the distal extremity of young men, must be closely scrutinized if there is a suspicion of malignancy,” the report says.

And while the course of the cancer is many times unpredictable, according to the report, it is common for the tumors to metastasize and for the cancer to reoccur within one to two years after treatment.

“Recent authors report a metastatic rate approaching 50 percent,” it says. “As is true for most soft tissue sarcomas, the lungs are the principal site of metastatic disease. ES has also been documented to metastasize to lymph nodes, skin, scalp, brain, digestive tract, liver, kidneys and musculoskeletal system.”

According to the Cincinnati Children’s Hospital Medical Center, while there’s still no known cause of the cancer, it’s been linked with an abnormality of a gene.

Treatment options for epithelioid sarcoma include removing the cancer through surgery, radiation therapy and chemotherapy, according to Mayo Clinic.

‘Champion for environmental sustainability and ending global poverty’

Janah founded three organizations — including artificial intelligence company Samasource, which employs nearly 3,000 people in Kenya, Uganda and India and creates data for companies that need to test artificial intelligence products such as self-driving cars.

Samasource called Janah a champion for environmental sustainability and ending global poverty.

“Her commitment to creating a better world was unparalleled. The ripple effects of her work will be felt for generations,” it said.

According to the company’s website, it is one of the largest employers in East Africa and has helped more than 50,000 people lift themselves out of poverty.

Janah was also the founder and CEO of LXMI, a fair-trade, organic skin care company, and Samaschool, a nonprofit organization that trains people in digital skills, according to Samasource.

She is survived by her husband and stepdaughter, the company said.

CNN