November 2018

A journey from HIV positive child to HIV activist

Created by:

Kananelo Khalla

Country:

Lesotho

Topics:

Adolescent Care & Treatment; Tuberculosis

My name is Kananelo Khalla. I am 24 years old. I grew up in the outskirts of Maseru, Lesotho. My mother is living with HIV and I was born with HIV, though I didn’t know my status till much later. I am the middle child, with an older brother and younger sister. Sadly, I lost them both to meningitis – my brother at the age of 4 and my sister at 6. We never knew if they were HIV positive or not since testing was not the norm back then.

2007 was the year my life changed. I was 12 years old when I was diagnosed with TB and I found out both my mother and I were also HIV positive. My CD4 count was lower than 350 and I was enrolled on treatment. My mother had a higher CD4 count and was not given treatment till 2016. Taking pills for the rest of my life has not been easy for me. I have adverse side effects like nausea. Still, under my mother’s strict guidance, I always tried to adhere to my treatment protocol. In 2005, my father passed away from TB.  We also never knew if he was HIV positive, but globally TB is a leading killer of persons living with HIV.  In 2015, 1 in 3 HIV deaths was due to TB. In 2016, the TB/HIV co-infection rate in Lesotho was 72%.

I did not share my status with other students because of fear of stigma and discrimination. Kananelo Khalla

In 2008, I joined a teen club where we were educated about HIV. During the holidays, I also attended a camp for children with HIV where we learned about treatment adherence, life skills and overcoming stigma. It’s an environment where I feel safe and empowered to open up to my peers about what I am going through and listen to their stories as well. Both the club and the camp have really helped me learn more about HIV and understand the importance of treatment adherence.

Kanello speaking on a panel session on improving communication between providers and young people living with HIV
With friends including Ndaba Mandela and EGPAF Ambassador Brian Ahimbisibwe

I was regularly teased in school because of illnesses I had that resulted in symptoms such as rashes and swollen lymph nodes. For this reason, I did not tell anyone about my status in primary school. In high school, I told my teacher and my two best friends. I did not share my status with other students because of fear of stigma and discrimination. In college, it was a big challenge to share a room with a stranger who did not know my status. I was relieved to share a room with my cousin, whom my family told about my status. When I had a new roommate, I decided to not disclose my status and hide when taking my treatment, which was never easy.

My CD4 never improved and my viral load was high. My health deteriorated as the hospital monitored my situation closely. In  2012 the hospital finally changed my treatment regimen from first-line drugs to second-line drugs. First-line antiretroviral therapy is the first combination of ARVs that the client is put on while second-line treatment is the subsequent regimen/combination used in if the first-line therapy has failed. With the second line treatment, my CD4 improved and viral load is now suppressed. After this, I became clinically stable and started living a healthy, more normal life.

Youth programs cannot be successful without involving youth in the decision-making process.

In 2016 I attended the AIDS conference in Durban, South Africa with other HIV positive youths. When I was in Durban, I did a radio interview, where I first disclosed my status publicly at the age of 22. Immediately I left the studio, I got calls and messages of support on social media. Some of the youth who reached out to me told me they were also HIV positive but scared to disclose their status, and they were encouraged by my disclosure. It is from this conference onwards that I started speaking about my status publicly. After the Durban conference, I decided that my focus will be to advocate for youth-friendly HIV and AIDS services, which were not widely available at that time in my country.

Kananelo with Sentebale founding patron, Prince Harry
With fellow Lesotho Youth Ambassador, Dee Mphafi, at a PEPFAR event

In 2017, I was among youth HIV activists who had the opportunity to participate in a roundtable meeting with global donors who support HIV and AIDS programs. The meeting was hosted by Prince Harry in London. We shared our life experiences, challenges, and recommendations for youth-friendly HIV services. We wanted things to be different so that programming would be better geared toward our needs by us helping to shape it.

In 2017, the Elizabeth Glaser Pediatric AIDS Foundation started providing adolescent and youth-friendly services in Lesotho. I applied for a Youth Ambassador position, whose role is like that of peer educator, and I was successfully placed in Scott Hospital in Morija. My role is to mobilize youth to know their HIV status and also to support those infected with HIV to join peer support groups. At the Peer Support Group, we give them on-going counseling to accept their HIV positive status and tips to disclose it to their loved ones. We also inform them about the different services available at adolescent clinics and teach those who are negative about different modes of prevention.

I feel honored to work in an organization whose vision is similar to my dream to see the next generation free from HIV.

In 2018, I attended the AIDS conference in Amsterdam. I met young people living with HIV, whom I admire and see as role models, such as Jake Glaser and other EGPAF Ambassadors. From this conference, I learned that youth programs cannot be successful without involving youth in the decision-making process. The conference lifted my spirit and showed me that young people are the biggest weapon to create change in any society.

Kananelo with Jake Glaser in Amsterdam for IAS 2018
With EGPAF Ambassadors (L-R: Martha Cameron, Josephine Nabukenya, Maurine Murenga, Jake Glaser, and Brian Ahimbisibwe)

I know what it means to have HIV at a young age, so I want to instill a sense of hope in those who have just learned about their status and encourage them to adhere to life treatment to ensure that they are virally suppressed. I believe that young people living with HIV should take care of other HIV infected adolescents and the younger generation, and the journey should continue for other generations to come. Let us continue to give hope and use our living testimonies to motivate others.

I know what it means to have HIV at a young age, so I want to instill a sense of hope in those who have just learned about their status.