Date: 11/05/2011

Author: Thandi Skade (The Star)

Lipodystrophy may be little known to many, but to those on ARVs, it can destroy health and self-esteem.

KHETHIWE* was on the verge of ending her life. Life for the teenager, who contracted HIV at a young age, was a misery as she endured countless nasty taunts from her peers over her changing appearance.

She dropped out of university after her first year and studied by correspondence to get away from the "girl with the muscle in her face" sneers. She removed all pictures of herself from the walls and started pulling away from people.

She became a recluse because her cheeks and temples had sunk in, making her face gaunt. She lost weight on her thighs and buttocks and her small breasts ballooned to an E cup, causing her back pain and severe discomfort.

She suffered from low self-esteem. Khethiwe's condition is called lipodystrophy – the maldistribution of fat from areas in the body where it should be to other areas. The syndrome develops in HIV-positive people as a sideeffect of antiretroviral drugs (ARVs).

Plastic and reconstructive surgeon Dr Gabriel Doucas explained that the condition grows "slowly, but relentlessly", causing patients to develop a distinctive look, ranging from distended stomachs, massive breasts, a lump of fat at the back of the neck called a buffalo hump and fat loss to the face.

In most cases men develop female breasts. The often "debilitating and embarrassing" syndrome poses a danger to patients as many people stop taking their pills. "They become unhappy with the physical changes in their appearance and, as a result, some patients stop taking their medication, which is the biggest disaster ever," he said.

Khethiwe admitted she had considered stopping her treatment many times. "I hated myself and the way I looked. At one point I wanted to kill myself. I also hated the pills... so I would sometimes take them and sometimes not," she said. But thanks to Doucas and a team of surgeons at Chris Hani Baragwanath Academic Hospital, Khethiwe and 16 other patients have been given "a second chance in life".

The team performed free surgery last week as part of the hospital and Wits University's plastic and reconstructive surgery department's biannual lipodystrophy week. The corrective surgery includes breast reductions, tummy tucks, liposuction or fat grafting (pumping fat from one part of the body to a sunken area) and usually costs between R20 000 and R50 000.

Medical aids don't cover these elective surgeries as they are considered cosmetic. More than 60 patients have been operated on since the initiative was launched in 2009. Doucas advised patients who develop the condition to seek immediate medical attention so doctors can change the combination of ARV drugs, which can prevent further spread of the syndrome.

Khethiwe, 20, was diagnosed with HIV six years ago, at the age of 14. Her CD4 count was in the double figures and doctors estimated she had contracted the virus sometime between the ages of four and six. She was told she had four to five months to live, but she was immediately put on to ARV treatment, which over time caused the change in her body shape and appearance.

Last year Khethiwe had a breast reduction and a fat grafting operation to her face and, last week, she had her cheeks refilled. "I started getting my social life back after my first op. Now I want to go out more because I feel comfortable in my body," she said. Her mother expressed her gratitude to doctors at the hospital for restoring her daughter's self-esteem. "Having this operation has brought her life back. I no longer fear that my child may commit suicide," she said.

* Not her real name

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