Lindelwa Portia

Lindelwa Portia is the passionate, no-nonsense director and initiator of Siyakhula Home Community Based Care (HCBC). She and ten other women began the organization in 2006, hoping to transform their community’s attitudes, understandings and well-being through home-based healthcare for HIV/AIDS patients and peer education for the families involved. TransCape partners with Siyakhula HCBC through funding and skills exchange.

Lindelwa grew up in East London, a small city on the south-east coast of South Africa. There, she completed grade school, met and married her husband and had a job at a local grocery store for seven years. Then, in 2004, Lindelwa decided to make a change: she moved to South Africa’s largest city, Johannesburg, to train as a nurse.

While at college, Lindelwa began to learn about HIV/AIDS and noticed some of the symptoms in herself. She became very worried and had an HIV test with the Treatment Action Campaign (TAC). Lindelwa tested positive and had a low immune-response cell (CD4) count of 176 per millilitre of blood. A normal CD4 count is around 1000: her immune system was already compromised. The TAC workers advised her to start antiretroviral (ARV) treatment immediately, as ARVs are meant to be started before a CD4 count drops below 200.

Lindelwa, however, was afraid to take the medication. She had heard rumours that ARVs could cause visions or even death. She put off treatment and soon became very sick.

Lindelwa stopped her studies and moved back to East London to be cared for by her parents. There, a group of TAC caregivers helped her parents treat her illness and started her on ARVs.

The ARV treatment helped over time, but the drugs were very harsh and hard to get used to. She had to take three pills everyday: two smaller ones in the morning and one large pill at night. The medication made her feel dizzy for hours and, in the case of the large pill, caused her to fall asleep ten minutes after taking it. The combination of the ARV side-effects and her state of health made Lindelwa so weak that she had to stay in bed or be moved by wheelchair for the first six months of her treatment.

In 2005, Lindelwa began to recover; her body became resilient and she was able to move around on her own. She decided that if her CD4 count rose over 200, she would work to show others that improvement was possible and that ARV treatment could help.

In 2006, Lindelwa’s CD4 count was over 270. She began to volunteer with the TAC, doing home visits, counselling clients and teaching families to care for their ill members. She enjoyed what she was doing and saw how her work strengthened communities, families and persons living with HIV/AIDS.

In June of 2006, Lindelwa visited relatives in the rural area of Lujizweni, Nyandeni municipality. She 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. She felt drawn to change the situation and proposed a home-based care and education program to the community.

By September of 2006, Lindelwa had moved to Lujizweni to start the project. She found 10 women who shared her concerns and began to train them as caregivers and peer educators.

Lindelwa 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. Lindelwa counselled them and together the women began a support group.

The 11 women 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. They run programs in three main areas: health, education and care for vulnerable children.

Lindelwa’s vision for the future is to expand the capacity of Siyakhula HCBC; to reach more areas and provide more services. Specifically, she hopes to build a hospice in Lujizweni for bedridden patients to receive 24-hour care. Also, she 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.

Stories Written by Karin Zylstra Sawatzky Photos by Matthew Zylstra Sawatzky