The woman who was the face of endometriosis in Kenya

Basillioh Rukanga,BBC News, Nairobi

Kenyan Daily Nation radio host Jahmby KoikaiDaily Nation

Mary Njambi Koikai, better known as Jahmby Koikai, dedicated most of her young life to telling her fellow Kenyans about the debilitating condition of endometriosis, which led to her death this week at just 38 years old.

As a popular radio host and reggae DJ, she had the perfect platform.

She bravely shared her struggles, often holding authorities accountable and demanding better healthcare for women, especially those struggling with menstrual disorder.

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

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

However, it took 17 years to find out exactly what he was suffering from and to obtain a proper diagnosis of the condition.

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

Endometriosis is a gynecological condition associated with menstruation in which tissue similar to the lining of the uterus develops in other areas of the body, including the fallopian tubes, pelvis, intestines, vagina, and intestines.

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

Symptoms include severe to debilitating pain, often in the pelvic area, fatigue, and heavy periods.

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

Mrs. Koikai’s was one of those extreme cases, and her condition worsened over the years, especially as her reproductive organs matured.

It affected his studies, his relationships, his work and many other aspects of his life.

He told the BBC in 2020 that at one point, while at university, he took an exam but couldn’t write anything due to the pain. He had to repeat a few years, delaying his graduation.

In 2015, her lung collapsed due to thoracic endometriosis, a rare manifestation of the disease. The condition would recur in the following months and years, often requiring specialized surgery.

One of the most enduring images of Ms. Koikai is of her in a hospital bed with her upper body heavily bandaged and many tubes along the right side of her chest.

This was in 2018, when he already had a series of lung collapses and surgeries.

She had been admitted to a specialized hospital in the United States and was raising funds for the expensive treatment.

He was weak and suffered a lot. “I won’t describe the pain because I lack words that adequately fit what I’ve been through,” she said at the time.

The condition had devastated his body. At the US hospital, tissue that had grown due to endometriosis was removed from her uterus, intestinal areas and ovaries.

The biggest challenge, he said, was his lungs.

It had spread so much, in part because of the way it had been previously handled at home, that the surgeon in the United States could not “believe everything that had been done.”

“Scar tissue and incorrect chest tube placement (in Kenya) created this disaster,” he said.

Despite his many scars, he still smiled.

Jahmby Koikai Jahmby KoikaiJahmby Koikai

Much of his time in the hospital was to correct a botched surgery due to a misdiagnosis.

“Deep scars. Raw scars.” As she described it, “each of the scars told a story. I see everything I’ve fought for. Emotionally. Mentally. Physically”.

However, he decided to fight his condition with strength, while publicly raising awareness about his condition.

Mrs Koikai was born in 1986 on the outskirts of the capital, Nairobi.

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

She had always wanted to be a broadcaster from the beginning.

Despite her condition, she managed to complete her university studies and become a popular radio host and reggae DJ, also known as Fyah Mummah to her fans.

Most people in Kenya probably learned about this disease from her.

Five things about endometriosis:

  • It affects around 10% of women and girls of reproductive age worldwide.
  • It is a chronic disease associated with severe pain that affects life, especially during periods, sexual intercourse, and bowel movements.
  • It has no known cure and treatment is usually aimed at controlling symptoms.
  • While early diagnosis and effective treatment of endometriosis is important, this is often limited in low- and middle-income countries.

Doris Murimi, founder of Endo Sisters East Africa, a non-governmental organization that raises awareness about this disease, was one of the panelists at a local television station’s forums when Koikai publicly told her story for the first time.

She said that until then, many people didn’t seem to understand endometriosis, even when her organization went out to train and talk to people.

After that, “she was always the point of reference, so she was basically the face of endometriosis awareness in this country,” Murimi told the BBC.

Endometriosis affects around 10% (190 million) of women and girls of reproductive age worldwide, according to the World Health Organization (WHO).

There is no known cure, so treatment usually consists only of controlling symptoms.

But Ms Koikai admitted the “biggest challenge” for people with endometriosis was “misdiagnosis and with this comes failed surgeries and wrong medication”.

That’s what she had been through, she said, and doctors had to deal with the damage caused by a misdiagnosis before controlling the disease.

She remained in the United States for about two years while doctors treated her.

Then, and over the following years, he recounted his experience, which caused many people to become involved and identify with the condition.

Murimi believes that by living and sharing his story, Koikai had moved the country to understand what was a complex thing to understand.

Many others have paid tribute to her strength in standing up for women suffering from endometriosis.

Comedian Senje, who also suffers from the disease, says the encouragement she received from Koikai was invaluable in her own struggle.

“You gave me strength every time I felt like giving up, I admired you because I believed that if you could do it, I would too… My heart is broken,” said the comedian whose real name is Sylvia Savai.

Dennis Itumbi, strategist for Kenya’s ruling coalition, highlighted Ms Koikai’s efforts to raise awareness even until her final days.

“In your final days, you strived to understand and raise awareness about the dilemma many girls face: thoracic endometriosis. You died educating and motivating me,” she wrote.

On May 20 he presented his last post on Instagram addressed to President William Ruto, calling for better access to health “for millions of women who silently fight endometriosis.”

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

In the end, his life, his fight and his campaign made the difference.

“A lot of things have changed thanks to Koikai,” Ms. Murimi said, noting that as of last year there was “an endometriosis center… and we have like two or three top-level specialists.”

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

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