Endometriosis spokesperson in Kenya

Mary Njambi Koikai, better known as Jahmby Koikai, dedicated much of her short life to Kenya fellow woman, to educate her on the serious condition of endometriosis, which led to her death this week at the age of 38.

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

She courageously shared her struggles, often holding authorities accountable and demanding better healthcare for women, especially those suffering from menstrual irregularities.

“People do understand her pain,” activist Doris Murimi told the BBC.

From the age of 13, she experienced unbearable pain from her menstrual cycle every month.

However, it took 17 years before we knew exactly what disease she had and received the correct diagnosis.

This is due to the lack of local facilities dedicated to treating endometriosis.

Endometriosis is a menstrual-related gynecological condition in which tissue that resembles the lining of the uterus develops in other parts of the body, including the fallopian tubes, pelvis, gut, vagina, and intestines.

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

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

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

Ms. Xiaohai’s case was one of them, with her condition worsening year by year, especially as her reproductive organs matured.

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

In 2020, she recalled to the BBC that while at university she once sat for an exam but was unable to write anything because of the pain. She had to repeat a few years and postpone her graduation.

In 2015, her lungs collapsed due to 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 memorable photos of Ms. Kai is of her lying in a hospital bed, her upper body covered in heavy bandages and tubes on the right side of her chest.

That was in 2018, by which time she had already endured a series of lung failures and surgeries.

She has been admitted to a specialist hospital in the United States and is raising funds for expensive treatment.

She was weak and in pain. “I won’t describe the pain because I don’t have the words to properly describe what I’m going through,” she said at the time.

The condition had severely damaged her body. At the US hospital, tissue grown from endometriosis was removed from her uterus, intestinal area and ovaries.

The biggest challenge, she said, was her lungs.

It spread so widely, in part because of how it was previously handled at home, that America’s surgeon general couldn’t “believe what was happening.”

“Scar tissue and incorrect chest tube placement [in Kenya] It created this chaos,” she said.

Despite the scars on her body, she was still smiling.

“Deep scars. Exposed scars.

However, she chose to stay strong and fight her condition while publicly raising awareness about the condition.

Ms. Xiaokai was born in 1986 in the suburbs of the capital Nairobi.

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

She has dreamed of becoming an anchor since she was a child.

Despite her poor health, she completed university and became a popular radio host and reggae DJ – also known as Fyah Mummah to her fans.

It’s probably because of her that most people in Kenya know about the situation.

• Approximately 10% of women and girls of childbearing age globally are affected
• It is a chronic disease associated with severe, life-threatening pain, especially during menstruation, sexual intercourse, and bowel movements
• It has no known cure and treatment usually aims to control symptoms
• While early diagnosis and effective treatment of endometriosis is important, this is often limited in low- and middle-income countries

Doris Murimi is the founder of Endo Sisters East Africa, an NGO that raises awareness about the condition, when Ms. The first time she told her story publicly, she was a panelist on a forum on local television.

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

Since then, “she has been a reference point, so basically she is really 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) women and girls of childbearing age worldwide.

There is currently no known cure, so treatment usually just manages symptoms.

But Ms. Xiaokai admitted that the “biggest challenge” faced by endometriosis patients is “misdiagnosis, followed by botched surgeries and wrong medication.”

That’s what happened to her, she said, and doctors have to deal with the damage caused by misdiagnosis before they can treat the disease.

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

Then, over the next few years, she documented her experience, which allowed many people to engage and identify with the situation.

Ms. Murimi believes that through personal experience and sharing her story, Ms. Xiaokai has helped the entire country understand what a complicated matter is.

Many paid tribute to her for speaking out for women with endometriosis.

Comedian Senjie, who also suffers from the condition, said the encouragement Ms Kay gave her was invaluable in her own battle.

“You gave me strength every time I wanted to give up, and I respect you because I believe that if you can succeed, then I will too… My heart is broken,” said the actress, whose real name is Sylvia. Said the Savoy comedian.

Dennis Itumbi, a strategist for Kenya’s ruling coalition, noted that Ms Kay spent her final days working to raise awareness.

“In your last days, you worked hard to understand and raise awareness of a dilemma that many girls face – breast endometriosis. You died educating and inspiring me,” he wrote.

On May 20, she proposed Her last post on Instagram Letter to President William Ruto calling for better health “for the millions of women who silently struggle with endometriosis”.

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

Ultimately, her life, her struggles and her campaign brought about change.

“Thanks to Koikai, a lot of things have changed,” Ms Murimi said, noting that since last year there was “an endometriosis center… where we have two to three top specialists”.

But she said the fight to address menstrual irregularities will continue.