The woman who was the face of endometriosis in Kenya

Mary Njambi Koikai, higher referred to as 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 dying this week aged simply 38.

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

Bravely, she shared her struggles, typically calling these in authority to account, demanding higher healthcare for ladies, particularly these combating the menstrual dysfunction.

“Individuals actually recognized together with her struggling, together with her ache,” fellow activist Doris Murimi instructed the BBC.

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

Nevertheless, it took 17 years to know precisely what she was affected by and get a correct analysis 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 just like the liner of the womb develops in different areas of the physique, together with the fallopian tubes, pelvis, bowel, vagina and intestines.

Endometriosis shouldn’t be thought of deadly, however in uncommon cases it could actually trigger life-threatening issues.

Signs embody extreme to debilitating ache typically 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 kind of excessive instances, together 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, typically requiring specialised surgical procedure.

One of the enduring photos of Ms Koikai is of her in a hospital mattress together with her higher physique closely bandaged, and plenty of tubes alongside the best 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 lots of ache. “I can’t describe the ache as a result of I lack phrases that aptly match what I’ve been by way of,” 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 most important problem, she mentioned, was her lungs.

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

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

Regardless of her many scars, she was nonetheless smiling.

“Deep scars. Uncooked scars.” As she described it, “every of the scars instructed a narrative. I see all I’ve battled. Emotionally. Mentally. Bodily.”

But she selected to battle her situation with fortitude, whereas publicly elevating consciousness of the situation.

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

She was raised by her mom and grandmother, who taught her to be affected person and difficult in each life’s scenario.

She had at all times wished to be a broadcaster from early on.

Regardless of her situation, she managed to finish her college research and turn out to be a well-liked radio host and a reggae DJ – also called Fyah Mummah to her followers.

It’s potential that most individuals in Kenya received to know of the situation due to her.

• It impacts about 10% of reproductive age ladies and ladies globally
• It’s a persistent illness related to extreme, life-impacting ache particularly during times, sexual activity and bowel actions
• It has no recognized remedy and therapy is normally aimed toward controlling signs
• Whereas early analysis and efficient therapy of endometriosis is essential, that is typically restricted in low- and middle-income international locations

Doris Murimi, the founding father of Endo Sisters East Africa, a non-government organisation that raises consciousness in regards to the situation, was one of many panellists in one of many boards on an area TV station when Ms Koikai first publicly narrated her story.

She mentioned that till then, many individuals didn’t appear to know endometriosis, even when her organisation went out to coach and speak to folks.

After that, “she was at all times the reference level, so mainly she actually was the face of endometriosis consciousness on this nation”, Ms Murimi instructed the BBC.

Endometriosis impacts about 10% (190 million) of girls and ladies of reproductive age globally, in line with the World Well being Group (WHO).

There is no such thing as a recognized remedy, so therapy is normally simply controlling the signs.

However Ms Koikai admitted that the “largest problem” for folks with endometriosis was “misdiagnosis and with this comes botched surgical procedures, incorrect medicine”.

That’s what she had gone by way of, she mentioned, with medical doctors having to take care of the harm prompted as a result of misdiagnosis earlier than managing the illness.

She stayed about two years within the US whereas medical doctors handled her.

Then and thru the years that adopted, she chronicled her expertise, which made many individuals interact and establish with the situation.

Ms Murimi believes that by residing and sharing her story, Ms Koikai had moved the nation to know what was a fancy factor to grasp.

Many different folks have paid tribute to her power in talking up for ladies suffers from endometriosis.

Comic Senje, who additionally has the situation, says the encouragement she obtained from Ms Koikai was invaluable in her personal battle.

“You gave me power each single time I felt like giving up, I appeared as much as you as a result of I believed in case you made it then I’d too… My coronary heart is damaged,” mentioned the comic whose actual identify is Sylvia Savai.

Dennis Itumbi, a strategist in Kenya’s ruling coalition, famous Ms Koikai’s efforts to create consciousness even as much as her final days.

“In your last days, you pushed to know and lift consciousness in regards to the dilemma many women face – thoracic endometriosis. You died educating and motivating me,” he wrote.

On 20 Could, she put up her last submit on Instagram addressed to President William Ruto, calling for higher entry to well being “for tens of millions of girls battling endometriosis in silence”.

She died two weeks later in a Nairobi hospital from issues linked to the situation.

In the long run, her life, her battle and marketing campaign made a distinction.

“So much has modified, because of Koikai,” mentioned Ms Murimi, noting that since final yr, there was “an endometriosis centre…and we’ve got like two or three prime specialists”.

However the struggle to handle menstrual issues will proceed, she mentioned.