The girl who was the face of endometriosis in Kenya

Mary Njambi Koikai, higher often called Jahmby Koikai, devoted most of her brief life to telling her fellow Kenyans in regards to the debilitating situation of endometriosis, which led to her demise this week aged simply 38.

As a well-liked radio host and reggae DJ, she had the proper platform.

Bravely, she shared her struggles, usually calling these in authority to account, demanding higher healthcare for girls, particularly these fighting the menstrual dysfunction.

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

From the tender age of 13, she skilled an everyday month-to-month torment, an excruciating ache that got here along with her menstrual cycle.

Nevertheless, it took 17 years to know precisely what she was affected by and get a correct prognosis for the situation.

That was due to the dearth of native amenities specialising within the therapy of endometriosis.

Endometriosis is a gynaecological situation related to menstruation the place tissue much like the liner of the womb develops in different areas of the physique, together with the fallopian tubes, pelvis, bowel, vagina and intestines.

Endometriosis will not be thought-about deadly, however in uncommon cases it could actually trigger life-threatening problems.

Signs embrace extreme to debilitating ache usually within the pelvic space, fatigue, and heavy intervals.

In uncommon instances it could actually additionally seem in different elements of the physique together with the lungs, mind, and pores and skin.

Ms Koikai’s was a type of excessive instances, along with her situation worsening over time, particularly as her reproductive organs matured.

It affected her education, relationships, work and plenty of different facets of her life.

She recounted to the BBC in 2020 that at one level whereas in college, she sat an examination however couldn’t write something due to the ache. She needed to repeat some years, delaying her commencement.

In 2015, her lung collapsed from thoracic endometriosis, a uncommon manifestation of the illness. The situation would recur in subsequent months and years, usually requiring specialised surgical procedure.

One of the vital enduring photos of Ms Koikai is of her in a hospital mattress along with her higher physique closely bandaged, and plenty of tubes alongside the precise aspect of the chest.

This was in 2018, when she already had a sequence of lung collapses and surgical procedures.

She had been admitted to a specialised hospital within the US and was fundraising for the costly therapy.

She was weak and in numerous ache. “I will not describe the pain because I lack words that aptly fit what I’ve been through,” she mentioned on the time.

The situation had ravaged her physique. On the US hospital, tissue that had grown due to the endometriosis was faraway from her uterus, bowel areas and ovaries.

The largest problem, she mentioned, was her lungs.

It had unfold a lot, partly due to the best way it had beforehand been managed again house that the surgeon within the US couldn’t “believe all what had been done”.

“The scar tissue and the placement of wrong chest tubes [in Kenya] created this mess,” she mentioned.

Regardless of her many scars, she was nonetheless smiling.

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

Yet she chose to battle her condition with fortitude, while publicly raising awareness of the condition.

Ms 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 life’s situation.

She had always wanted to be a broadcaster from early on.

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

It’s possible that most people in Kenya got to know of the condition because of her.

• It affects about 10% of reproductive age women and girls globally
• It is a chronic disease associated with severe, life-impacting pain 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, the founder of Endo Sisters East Africa, a non-government organisation that raises awareness about the condition, was one of the panellists in one of the forums on a local TV station when Ms Koikai first publicly narrated her story.

She said that until then, many people did not seem to understand endometriosis, even when her organisation went out to train and talk to people.

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

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

There is no known cure, so treatment is usually just controlling the symptoms.

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

That’s what she had gone through, she said, with doctors having to deal with the damage caused due to misdiagnosis before managing the disease.

She stayed about two years in the US while doctors treated her.

Then and through the years that followed, she chronicled her experience, which made many people engage and identify with the condition.

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

Many other people have paid tribute to her strength in speaking up for women suffers from endometriosis.

Comedian Senje, who also has the condition, says the encouragement she received from Ms Koikai was invaluable in her own struggle.

“You gave me strength every single time I felt like giving up, I looked up to you because I believed if you made it then I would too… My heart is broken,” said the comedian whose real name is Sylvia Savai.

Dennis Itumbi, a strategist in Kenya’s ruling coalition, noted Ms Koikai’s efforts to create awareness even up to her last days.

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

On 20 May, she put up her final post on Instagram addressed to President William Ruto, calling for better access to health “for millions of women battling endometriosis in silence”.

She died two weeks later in a Nairobi hospital from complications linked to the condition.

In the end, her life, her struggle and campaign made a difference.

“A lot has changed, thanks to Koikai,” said Ms Murimi, noting that since last year, there was “an endometriosis centre…and we have like two or three top specialists”.

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