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Mom on a mission

After losing three children to HIV, AIDS activist Connie Mudenda educates the world

Published 25 November 2021

Connie Mudenda faced the unbearable, the unthinkable - losing three precious babies to HIV.

It was the late 1980s, a time when little was known about this virus that attacks the immune system, and can lead to AIDS.

Diagnostic testing and treatment were not yet available in Connie’s African homeland of Zambia. Unaware that she was HIV-positive, Connie unknowingly passed the virus to her daughter, Lubona, who died at age 7. Her son, Chabala, and daughter, Namuya, both died before their second birthdays.

“I later found out that the hospital tested them and that they died from AIDS. But they didn’t tell me. It was taboo back then to talk about it,” says Connie, who also nursed her sister through a long illness before her death. Then, too, her family was not told the young woman had AIDS.

Through her profound grief, Connie has created beauty and hope - beauty in the birth of her gorgeous daughter, Lubona, who is named after her oldest child that she lost all those years ago. Lubona was born healthy in 2012, years after Connie tested positive for HIV and started treatment.

Connie inspires hope in the many people, young and old, that she impacts as an AIDS activist.

Connie Mudenda
Connie has served as an AIDS activist since her HIV diagnosis in 2004

Life after loss started for Connie at the community clinic where she was first tested and diagnosed with HIV in 2004, after fighting off tuberculosis and other infections. “I think if I had delayed going in for a test that day, I would have fallen seriously ill and died,” she says.

Thanks to antiretroviral medication and regular testing, Connie has been healthy for 16 years. While the medication is not a cure, it keeps the virus under control, which can eliminate or reduce the possibility of spreading. 

Within days of her HIV diagnosis, Connie returned to the clinic, this time as a volunteer.

‘Desperate for life’

“Almost everyone coming to the clinic was in a wheelchair or a wheelbarrow or on a stretcher, because none could walk,” she recalls. “They were desperate for life.” 

Connie set out on a lifelong path as an AIDS activist, sharing her story and spreading knowledge about the importance of HIV testing, medication and monitoring. She cheered on her community as they got up out of their wheelchairs and wheelbarrows and returned to health. 

Connie’s reach is felt in her homeland of Zambia but also around the world. She is an ambassador for (RED), which works with corporations like Roche to generate awareness and raise money for the Global Fund, with the goal of defeating AIDS and other infectious diseases.

The COVID-19 pandemic has caused people to take their eyes off of HIV. We have made progress, but we are losing ground.
Connie Mudenda AIDS activist

She serves as a mentor and role model for HIV-positive women who worry they may never have a healthy baby.

When Lubona was born in 2012, Connie worried that she could have passed on the virus again, even though she was vigilant in taking her medication. Lubona was tested for HIV at six weeks, and Connie was told to come back in a month for results.

When she returned, she was told the results were not ready, and to come back again in two weeks. After two weeks, the results could still not be found.

“You can imagine my anxiety. I went into the lab myself, and said, ‘I’m not leaving until you give me my results.’ ”

The results were found.

Negative.

Connie Mudenda and her daughter, Lubona, 9
Lubona loves riding her bike, and dreams of one day becoming a doctor

“You feel like you are carrying something heavy on you for such a long time. And then you just feel it being lifted away and you feel so free,” Connie says of the negative test result. 

Today, 9-year-old Lubona loves to ride her bike, and peppers her mom with thought-provoking questions. She dreams of becoming a doctor, and studies TV shows about medicine. 

For Connie, every 13th of October is joyous.    

“I celebrate my birthday because I was born on that day. I also celebrate my new  life. It’s the day that I received access to antiretroviral medication. If I were not taking my medicine properly, consistently, religiously, faithfully, I wouldn't be here.”

One on this planet

Connie says it is more important than ever for the world to be committed to ending AIDS. The COVID-19 pandemic has disrupted essential HIV programmes, and fewer patients are being monitored.

“We need to give each pandemic the attention that it deserves,” she says.

The theme of the 2021 World AIDS Day on 1 December resonates with Connie - End Inequalities. End AIDS. End Pandemics.

“It takes you and me to end all the three,” she says. “You cannot run away from it. We may be different races, religions, beliefs. But as long as we all have red blood, we are one on this planet. Let us work together.

That is the only way we're going to come out of this. And if we’re not careful, by the time we realise it, it will be too late.”

Tags: People, Society