Doris Murimi, founder of Endo Sisters East Africa, a non-governmental organization that raises awareness of the disease, said Koikai was featured on a local TV station when she first told her story publicly. I was one of the panelists on one forum.
She said that until then, many people didn't seem to understand endometriosis, even after her organization received training and spoke to people.
Afterwards, “she was always a reference point and basically she was the face of endometriosis awareness in this country,” Ms Murimi told the BBC.
According to the World Health Organization (WHO), endometriosis affects approximately 10% of women of reproductive age (190 million people) worldwide.
There is no known cure, so treatment usually involves controlling symptoms.
But Koikai acknowledged that the “biggest challenge” for patients with endometriosis is “misdiagnosis, which leads to wrong surgery and wrong medication.”
That's what she's been through, and doctors say they have to deal with the toll of a misdiagnosis before they can manage the disease.
She remained in the United States for about two years while doctors treated her.
Over the next few years, she recorded her experiences, which led many people to engage with and identify with the condition.
Mr. Murimi believes that by bringing his story to life and sharing it, Mr. Koikai has moved the nation to understand what was difficult to understand.
Many others also paid tribute to her strength in advocating for women suffering from endometriosis.
Comedian Senje, who also suffers from the condition, said the encouragement he received from Mr Koikai was invaluable in his fight.
The comedian, whose real name is Sylvia Sabai, said, “I gave you strength every time I wanted to give up, and I respected you because I believed that if you could do it, I would too,” adding, “It’s heartbreaking.”
Dennis Itumbi, a strategist for Kenya's ruling coalition, noted that Mr Koikai worked until the last minute to raise awareness.
“In your final days, you have worked to increase understanding and awareness of a dilemma many girls face: thoracic endometriosis. You died to educate and motivate me,” he wrote.
On May 20th, she posted her last post on Instagram., Out It has urged President William Ruto to provide better access to health for “the millions of women who battle endometriosis in silence”.
She died from complications related to the disease two weeks later at a hospital in Nairobi.
Ultimately, her life, her struggles and her campaigns made a difference.
“Thanks to Koikai, a lot of things have changed,” said Murimi, adding that since last year, “an endometriosis center has been created…and we have two or three top specialists.”
But the fight to address menstrual disorders will continue, she said.
