POPWHA - Parents of people with HIV/AIDS

What do you do when your child tells you he or she is HIV-positive? Tell no-one? Limp along in the vain hope that this world of half-life and half-death will miraculously fade away? Soweto businesswoman Sibongile Mazibuko knows the feeling well. She will tell you that it was 4.05 p.m. on a Friday 10 years ago that her son, Lucky, disclosed his HIV status to her. "I swallowed hard. I stood up. I sat down," she recalls. "I told him not to say such things because it wasn't true. But, of course, it was. Why would he tell me otherwise?"

Shock, despair, pain, fear - as a mother, Mazibuko experienced them all. However, instead of shunning her son, as many do when faced with the same dilemma, she embraced him. "We both cried that day," says Mazibuko. "Yes, my heart was heavy - but he was my child and I loved him. That's all that mattered. We would face whatever we had to together."

Today, Sibongile knows everything there is to know about a disease that may one day claim her son's life. She talks about her situation openly. It's a tough honesty, but one that she hopes will become the shining icon of a new national organisation she helped launch this week in Johannesburg, called Parents of People With HIV/AIDS (POPWHA).

The aim of POPWHA, run under the auspices of the Palliative Medicine Institute and in partnership with the National Association of People Living With AIDS, will be to encourage parents to become activists in their communities, particularly those in rural areas where information about the disease is often non-existent. The first workshop to train parents on the best ways to look after and relate to their HIV-positive children will be held this month.

With her as co-founder is Dr Selma Browde, a radiation oncologist and one-time lone Progressive Party stalwart in the Johannesburg City Council. She also has first-hand experience of HIV/AIDS. There is no room for regrets or sadness and she tells those gathered for the launch at the Braamfontein Recreational Centre that her son was diagnosed HIV-positive 17 years ago.

"It made me realise that we, as parents, have to communicate with each other. You can try to appeal to the youth to change their behaviour. Caps, T-shirts and rallies don't work. The stigma and shame is so great that children don't tell parents. That's where the real problem lies. You have to help parents to understand that their children are not sinners because they have indulged in sex; they are not sinners because they happen to be HIV-positive."

She said eradicating the secrecy and ignorance surrounding HIV/AIDS will be aided by parents networking. "They need to know that it is vital to keep the children's immune systems as healthy as possible through care and good nutrition in the first and second phase, until the day they need antiretrovirals." She said she believed that this, coupled with open communication about the disease, could begin to contain and slow down the pandemic.

When Browde's son, Paul, now a doctor of psychiatry in New York, was first diagnosed HIV-positive, he told his mother. But Browde told no-one - not even her husband. It was her son who decided to be open about his status. "It helped me to become a better parent and friend," she says. "Now we can discuss these issues, talk about therapies, relationships, even death and dying, without any inhibitions."

This was not a "bells-and-whistles" launch, and funds are limited, but chords were touched. Queenie Maseko, an Orlando West grandmother, told of her troubled 14-year-old granddaughter who has cried herself to sleep since the death of her parents from AIDS-related illnesses last year. "I need someone to talk to. If I knew more, then I, too, could talk to others."

Nurse Christine Peterson, of Orlando West in Soweto, knows that honesty and disclosure work. "People at work and my friends all know that my daughter Nomonde, 37, is HIV-positive. We talk about it openly and it helps others to do the same. We live a very normal life. We laugh and we have friends around for supper. Life has not changed just because we have a virus in the family. We are very open about HIV/AIDS and if my grandchildren want to ask things, they know they can. Because of that, they are not troubled in any way. We are careful about nutrition and my daughter is well at the moment."

These are the sorts of stories that POPWHA hope will soon be heard all over the land - very loudly and very clearly. For more information, call the Palliative Medicine Institute at 011 643 2001 or e-mail: [email protected].