“I don't want to look like an AIDS victim”: A New Zealand case study of facial lipoatrophy

Abstract

The development of antiretroviral (ARV) drugs to treat HIV has turned what was once a death sentence into a chronic disorder. However, a focus on absence of disease in the form of an undetectable viral load and the dismissal of the so-called "cosmetic" complications of the disease ignores perceptions of health and well-being of those living with HIV. Facial lipoatrophy is a stigmatising side effect of treatment for HIV as it betrays the presence of the virus within the body. The study took a longitudinal qualitative approach, interviewing 11 people twice over a period of 1 year on their experience of living with HIV. Two participants were given cameras and asked to take photos which represented what it was like for them to live with this condition and were interviewed four times at four monthly intervals. This paper looks at one man's struggle to conceal or veil his facial lipoatrophy. His story is presented in the form of "selfies" and extracts from in-depth interviews. It tells of an emotional (ongoing) journey of frustration, anger, excitement, depression and resignation which had a profound effect on his sense of social and psychological well-being. This suggests a more holistic approach to treating people living with HIV is needed. While an undetectable viral load is indeed vital, it should not be seen as the only essential outcome of treatment. K E Y W O R D Sfacial lipoatrophy, HIV, stigma, well-being

Psychometric Validation of the Brazilian Portuguese Version of the Derriford Appearance Scale-24 (DAS-24) for People Living with HIV/AIDS

“…This occurs due to several factors, such as: HIV infection, genetic factors, use of antiretrovirals, among others [12] HIV infection and HAART have been associated with the development of cardiovascular and metabolic complications, including lipodystrophy syndrome. In Brazil, the prevalence of lipodystrophy manifestation has ranged from 32.4 to 64%, in line with the average found in the literature, of 42% (SESSP, 2017), with an overall prevalence of at least one physical abnormality that is related to the poor distribution of body fat, estimated at about 50% after one year of TARV use [13] with an impact on financial life, social relationships, and love relationships [7].…”

“…Improvements in antiretroviral therapy (ART) have resulted in reduced mortality rates, increased quality of life, and a reduced likelihood of transmission to others [5]. After the diagnosis, there are two important moments, in which substantial changes in body image are experienced: the moment of diagnosis per se and the moment when the symptoms of the disease become visible [6,7].…”

HIV and antiretroviral therapy-related fat alterations

“…After the advent of effective cART in the mid-tolate 1990s, lipodystrophy was generally considered as an unavoidable adverse effect of life-saving therapies. Of the fat alterations in PLWH, facial lipoatrophy is particularly stigmatizing and is suggestive of the use of anti-HIV drugs 275,276 . However, studies specifically assessing the effect of fat alterations on HRQOL are scarce, particularly in children (Box 2), and the available QOL instruments do not allow a comparative assessment across countries, studies and populations.…”

Psychometric validation of the Brazilian Portuguese version of the Body Image Scale – HIV for people living with HIV/AIDS

“…Despite not being related to the mortality and morbidity of HIV/AIDS, PVHA report that dealing with lipodystrophy can be more difficult than with HIV itself, since the subjective experience with appearance can be more challenging than the objective reality in terms of self 12 . As the signs of lipodystrophy begin to appear, the expectation of the reaction of others often causes social withdrawal, shame and guilt 13 .…”