I am Lindelwa Portia Mkizwana. I am the director and initiator of Siyakhula Home Community Based Care (HCBC). Myself and ten other women began the organization in 2006, hoping to transform our community’s attitudes, understandings and well-being through home-based healthcare for HIV/AIDS patients and peer education for the families involved. TransCape Non-Profit organization partners with us through funding and skills exchange.
I grew up in East London, a small city on the south-east coast of South Africa. There, I completed grade school, met and married my husband and had a job at a local grocery store for seven years. Then, in 2004, I decided to make a change: I moved to South Africa’s largest city, Johannesburg, to train as a nurse.
While at college, I began to learn about HIV/AIDS and noticed some of the symptoms in myself. I became very worried and had an HIV test with the Treatment Action Campaign (TAC). I tested positive and had a low immune-response cell (CD4) count of 176 per millilitre of blood. A normal CD4 count is around 1000: my immune system was already compromised. The TAC workers advised me to start antiretroviral (ARV) treatment immediately, as ARVs are meant to be started before a CD4 count drops below 200.
I was, however, afraid to take the medication. I had heard rumours that ARVs could cause visions or even death. I put off treatment and soon became very sick.
I stopped my studies and moved back to East London to be cared for by my parents. There, a group of TAC caregivers helped my parents to treat my illness and started me on ARVs.
The ARV treatment helped over time, but the drugs were very harsh and hard to get used to. I had to take three pills everyday: two smaller ones in the morning and one large pill at night. The medication made me feel dizzy for hours and, in the case of the large pill, caused me to fall asleep ten minutes after taking it. The combination of the ARV side-effects and my state of health made me so weak that I had to stay in bed or be moved by wheelchair for the first six months of my treatment.
In 2005, I began to recover; my body became resilient and I was able to move around on my own. I decided that if my CD4 count rose over 200, I would work to show others that improvement was possible and that ARV treatment could help.
In 2006, my CD4 count was over 270. I began to volunteer with the TAC, doing home visits, counselling clients and teaching families to care for their ill members. I enjoyed what I was doing and saw how my work strengthened communities, families and persons living with HIV/AIDS.
In June of 2006, I visited relatives in the rural area of Lujizweni, Nyandeni municipality. I became troubled and compelled by the high level of HIV infection (29% of community members), low health standards and lack of HIV/AIDS knowledge in the community. I felt drawn to change the situation and proposed a home-based care and education program to the community.
By September of 2006, I had moved to Lujizweni to start the project. I found 10 women who shared my concerns and began to train them as caregivers and peer educators.
I encouraged the women to be tested for HIV themselves, telling them that they must “care for themselves if they are going to care for the people.” Seven of the ten women tested positive. I counselled them and together we began a support group.
We started Siyakhula HCBC by the end of 2006 and registered as a community based organization with the South African Department of Social Development in February, 2007. Siyakhula HCBC has since grown to have 34 caregivers in 10 communities. We run programs in three main areas: health, education and care for vulnerable children.
My vision for the future is to expand the capacity of Siyakhula HCBC; to reach more areas and provide more services. Specifically, I hope to build a hospice in Lujizweni for bedridden patients to receive 24-hour care. Also, I would like to see the organization move into more remote communities in Nyandeni municipality who have little access to health care, disability grants or other government services.