HIV: Finding hope
BRATTLEBORO >> "You know, everything that you wish or desire to dream (in) your life, it's very possible."
24 year-old Loyce Maturu, of Zimbabwe, is living with HIV. She has survived tuberculosis and the devastating loss of her father, mother and little brother, all by the time she was 8-years-old. With only extended family left, Loyce had no place to call home. She was shuffled from house to house.
By the time she was 12 years old she became ill. An aunt, that she was staying with, seeing the same symptoms that took the life of Loyce's mother and baby brother, brought her to get tested. She received her diagnosis of being infected with both HIV and tuberculosis.
"This was really a depressing time for me," Loyce said. "I got depressed, I cried so many times. I thought I was going to die because, in 2004, those were the days that people were saying that AIDS kills. It really got me to fear every time I breathed. I was like, 'I am going to die soon.'"
Luckily, The Global Fund, a financing institution that forms partnerships with governments, civil societies, and private sectors to accelerate the end of AIDS, tuberculosis and malaria as epidemics, had helped set up a clinic in Loyce's town. She was able to access care and the medications she needed to fight the TB infection.
Loyce stopped in Brattleboro as part of a multi-state media tour. She will end her visit to the United States later this week by speaking on Capitol Hill. She hopes to raise awareness for World TB Day on March 24 and hopes that her story will help in the 2016 replenishment of The Global Fund later this year.
Even with access, treatment was hard on Loyce. The pills she had to take were big, she wasn't used to taking medication every day. The social stigma was hurtful and she felt neglected. She managed to get through the six-month treatment and was able to start treatment for HIV.
This is when she became involved with Africaid Zvandiri, an organization in Zimbabwe providing community based prevention, treatment, care and support for children and adolescents living with HIV. Loyce was receiving the treatment she needed but still had so many questions. She discovered that others in her position had the same questions, "Are we going to survive?" And "Where are other people like us?"
Nicola Willis, then a nurse known as Auntie Nicola and now the director of Africaid Zvandiri, got these children together, six in total, and started a small support group. They would get together and have fun, share their experiences, and they felt like there was a reason to live. "Having love around us, being told that we are loved and that we are going to survive, that made me have hope," Loyce explained.
Five years later, the organization grew and Loyce trained for six months to become a peer counselor. Her role was to support her peers. She helped to encourage others to continue treatment, a big obstacle in adolescents getting better. "This is mainly because of the kind of neglect that is from our society, when people get to know that you are HIV positive and you have got tuberculosis," Loyce explains. "We also face mental health challenges so most of the time, we stop taking our medications." Meanwhile, Loyce was struggling. She was facing unexpected challenges herself. She was emotionally and physically abused by a family member, harassed because of her diagnosis, and made to feel unworthy. "I really felt like I had no reason to live because I have HIV. I am not normal." Facing too many challenges, Loyce ingested all of the medication that she had on hand and sent a message to one of the nurses telling them that she just wanted to die. They called her back and begged her to go into the organization's office and rushed her to the hospital where she was treated as soon as she arrived. "None of my family members came "
Later on she received psychological support and massive on-going counseling. During her treatment she made a realization, "If I am going to live in this world, I am going to live to support my peers who are also facing the same challenges. (I will help them) to gather their strength and continue living on."
Now, Loyce has gone beyond peer counseling and has taken her work international. She spoke at the 2013 World Health Organization Assembly in Geneva, Switzerland which led to her applying to the Global Fund Advocates Network, the very organization that helped her in the beginning. She has spoken in several countries and recently visited Vermont with the RESULTS organization, a United States based nonprofit, grassroots citizen's lobby working to create the political will to end hunger and the worst aspects of poverty. She believes it is important for her to be open about her story, sharing it as much as possible so others can benefit from her struggles. She is trying to not only raise awareness and funds for treatment but also she is trying to give a face to HIV and TB. "Usually people think that a person with HIV is skinny, they are not confident, they are just sick all the time. So, I came out in the open and started sharing my story internationally. (Now) I am influencing policies so they will be in the best interest of adolescence and young people. Most of the time people would not think on our behalf."
While in the US, Loyce has been sharing her story and thanking people for their support. Because of financial support from contributors, "We do not die because we do not have treatment." She continued to say that the current phase of The Global Fund is a critical one. Adolescence are the most vulnerable population when it comes to HIV and TB. Not only is medical treatment important but also the emotional care that the fund, and other organizations, supply. "(It is) most important for The Global Fund to provide the continuum of tuberculosis care because it's not only about providing treatment but it is also about supporting the people to be taking the medications so that our lives will be completely supported."
Loyce has been living with her diagnosis for half her life. She has dedicated that life to her peers and to educating others. When asked what she wanted others to know about her and her disease she said, "Being HIV positive or being affected by tuberculosis, it's not the end of the world. It's actually a new great beginning to start life at a new fresh page; Really knowing and understanding your health. You know, everything that you wish or desire to dream (in) life, it's very possible."
For more information on The Global Fund visit http://www.theglobalfund.org/en. To learn more about RESULTS and their work visit http://www.results.org. To watch a film about Loyce's story and learn more about Africaid Zvandiri go to http://www.africaid-zvandiri.org/portfolio/loyces-story/.
Michelle Stephens is a regular contributor to the Reformer as the author of Juicebox Confession.
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