Jahmby Koikai: The Woman Who Was the Face of Endometriosis in Kenya

Mary Njambi Koikai, better known as Jahmby Koikai, devoted much of her short life to telling her fellow Kenyans about the debilitating condition of endometriosis that led to her death this week at just 38.

As a popular radio host and reggae DJ, he had the right base.

Bravely, she shared her struggles, often holding those in power to account, demanding better healthcare for women, especially those struggling with menstrual disorders.

„People really identified with his suffering, his pain,” fellow activist Doris Murimi told the BBC.

From the age of 13, she experienced regular monthly agony, an excruciating pain that came with her menstrual cycle.

However, it took her 17 years to find out what she was suffering from and get a proper diagnosis for the condition.

This is due to the lack of local facilities specializing in the treatment of endometriosis.

Endometriosis is a gynecological condition related to menstruation, in which the lining of the uterus grows in other parts of the body, including the fallopian tubes, pelvis, bowel, vagina, and intestines.

Endometriosis is not considered dangerous, but in rare cases it can cause life-threatening complications.

Symptoms often include severe pain in the pelvic region, fatigue, and heavy periods.

In rare cases it can also appear in other parts of the body, including the lungs, brain and skin.

In one of the extreme cases of Mrs Koigai, her health deteriorated over the years, particularly as her reproductive organs matured.

It affected her schooling, relationships, work and many other aspects of her life.

He told the BBC in 2020 that when he was at university, he took an exam at one point but couldn’t write anything because of the pain. She had to repeat a few years, delaying her graduation.

In 2015, her lungs collapsed from thoracic endometriosis, a rare manifestation of the disease. The condition can recur in subsequent months and years, often requiring specialized surgery.

One of the most enduring images of Ms Koigai is of her in a hospital bed with her upper body strapped down and several tubes in the right side of her chest.

It’s 2018, and he’s already had lung collapse and surgeries.

He was admitted to a specialist hospital in the US and was raising funds for the expensive treatment.

She was weak and in a lot of pain. „I won’t describe the pain because I don’t have the appropriate words for what I went through,” he said at the time.

The condition made her body wither. At an American hospital, the tissue that grew due to endometriosis was removed from her uterus, bowels and ovaries.

The biggest challenge, he said, was his lungs.

It was so widespread, partly because of the way it had previously been managed back home, that surgeons in America „couldn’t believe all that was done”.

“Scar tissue and location of faulty chest tubes [in Kenya] created this confusion,” he said.

Despite her many scars, she kept smiling.

“Deep scars. Scars.”

Nevertheless, she chose to fight her condition with courage, while raising public awareness of the condition.

Mrs Koigai was born in 1986 in a suburb of the capital, Nairobi.

She was brought up by her mother and grandmother who taught her to be patient and tough in every life situation.

She wanted to be a broadcaster from the beginning.

Despite her condition, she completed her university studies and became a popular radio host and reggae DJ – known to her fans as Fia Mumma.

Because of her most people in Kenya probably know this condition.

Doris Murimi, of Endo Sisters East Africa, a non-governmental organization that raises awareness of the condition, was among the panel when Ms Koikai first told her story publicly at a forum on a local TV station.

Until then, she said, many people didn’t seem to understand endometriosis, even when her organization went out to educate and talk to people.

After that, „she was always the point of reference, so 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% (190 million) of women and women of reproductive age worldwide.

There is no known cure, so treatment usually controls symptoms.

But Ms Koigai admitted that the „biggest challenge” for people with endometriosis is „misdiagnosis and with it wrong surgeries, wrong drugs”.

That’s how she went about it, she said, with doctors having to deal with the damage caused by misdiagnosis before managing the disease.

He stayed in the US for about two years while doctors treated him.

Later and in the years that followed, he recounted his experience, which led many to identify with the condition.

By living and sharing her story, Ms Murimi believes Ms Koigai has moved the country to understand what is a complex issue to understand.

Many paid tribute to her strength in speaking up for women with endometriosis.

Senje, a stand-up comedian, says the encouragement she received from Ms Koigai was invaluable in her own struggle.

„You gave me strength every time I thought about giving up, I looked at you because I believed that if you made it I would too … My heart is broken,” said comedian Sylvia Savai.

Dennis Itumbi, a strategist for Kenya’s ruling coalition, noted his efforts to raise awareness of Ms Koigai’s death until her final days.

“In your final days, you pushed for understanding and awareness of the dilemma many women face – thoracic endometriosis. You died educating and inspiring me,” he wrote.

On May 20, she put His final post on Instagram Addressing President William Ruto, he called for access to better healthcare for the „millions of women who silently struggle with endometriosis”.

He died two weeks later in a Nairobi hospital from complications related to the condition.

Ultimately, her life, her struggle and her campaign made a difference.

„A lot has changed, thanks to Koikai,” Ms. Murimi said, noting that since last year, „there is an endometriosis center…and we have like two or three great specialists.”

But the fight to address menstrual disorders will continue, he said.