The term lipodystrophy actually means fat abnormalities. Lipodystrophy is a rare condition that happens to people without HIV and is identified by several different syndromes.

In HIV disease, the term lipodystrophy is used to describe a number of body shape changes and metabolic problems that may occur in HIV+ people. Scientists have not yet agreed upon an official definition of lipodystrophy in HIV. However, we do know that it can include two types of body changes: changes that you can see by looking at your body and changes that you cannot see without medical tests.

Changes that you can see by looking at your body occur from either loss of fat (lipoatrophy), or fat gain or redistribution (lipohypertrophy).

Fat loss may occur in the:

• Arms
• Buttocks
• Face (sunken cheeks)
• Legs

Fat loss may also cause bulging veins on the arms and legs.

Fat gain may occur in the:

• Stomach
• Breasts
• Back of the neck (“buffalo hump”)

Women are more likely to experience fat gain in the breasts and stomach.

Lipodystrophy can dramatically alter your appearance. These changes can leave some people with feelings of poor self-image and low self-esteem. Some people may want to stop taking their HIV drugs. Others may delay treatment due to a fear of experiencing lipodystrophy symptoms. You should talk to your doctor if you are feeling this way.

Changes you cannot see without medical tests can cause serious long-term health problems such as heart disease and diabetes. These metabolic complications include:

• Increased lipids (fats) in your blood such as cholesterol and triglycerides (hyperlipidemia)
• Increased glucose (sugar) levels
• Insulin resistance or diabetes
• Increased lactic acid in your blood. This condition, called lactic acidosis, is a rare but dangerous side effect of taking HIV drugs. Its symptoms include muscle fatigue that rapidly gets worse. It is a potentially-fatal condition that requires immediate medical attention.

The exact cause of lipodystrophy is unknown. Scientists have many theories and research in this area is ongoing. Most experts agree that a combination of several factors is likely to lead to lipodystrophy. Some of the factors include:

• Taking HIV drugs (while lipodystrophy has been seen in people taking almost any type of HIV therapy, there are theories that some protease inhibitors may be involved in fat gain and hyperlipidemia and certain nucleoside analogs, such as d4T, may be involved in fat loss)
• The length of time you are on HIV drugs (about 10 percent of HIV+ people develop fat re-distribution symptoms within the first two years of treatment)
• HIV itself (some HIV+ people who have body composition changes have never taken HIV drugs)

There is no simple treatment for lipodystrophy. Everyone is different and has different symptoms.

You may be able to treat some of the metabolic complications (such as increased cholesterol, triglycerides, or glucose levels) by switching HIV drugs or taking lipid-lowering medications.

The body composition changes are harder to change or treat. There are some short-term solutions, but they can be very expensive and don’t work for everyone. They include:

• Human growth hormone (HGH, Serostim) may decrease excess fat buildup and increase muscle size. It can, however, cause peripheral fat loss (in the arms, legs, or face). HGH is being studied with lipid-lowering drugs to help with some of these side effects.
• Liposuction (a cosmetic surgery procedure) can be used to remove fat from the back of the neck and around the breasts, but not on the stomach. Unfortunately, this is usually a temporary solution and the unwanted fat frequently returns.
• Fat (or fat substitutes) can be implanted into the face to help fill out sunken cheeks.

Other treatments are being researched.

In some cases, people stop or switch HIV medications to try and reverse body shape changes. More research is needed in this area to prove that switching is really helpful. It is important that you talk to your doctor before stopping or changing any HIV drugs.

If you are experiencing lipodystrophy it is especially important to take care of your body. Keep all of your doctor’s appointments, get regular lab tests, and tell your doctor about any changes in the way you feel or in your body shape. Record body measurements and weight twice a year whether or not you are taking HIV medications. This may give you valuable information down the road.

Some of these body composition and metabolic problems have been linked with heart disease and strokes in people without HIV, so make sure you are monitored closely. Other factors also contribute to the risk of heart attacks and strokes, including high blood pressure. If you have high blood pressure, make sure it is treated. You can also support your body, and especially your heart, with a healthy diet, regular exercise, and giving up smoking.

Even though the physical changes of lipodystrophy can cause emotional distress, no researcher has suggested that people with lipodystrophy should stop taking their HIV medications. If you are concerned about your appearance, speak to your doctor before making any changes to your HIV medication schedule that might jeopardize your health.

1		Levine, A. (2001). Gender differences in morphologic alterations. First International AIDS Society Conference on HIV Pathogenesis and Treatment, Buenos Aires, Argentina: Retrieved June 2003 from http://www.natap.org/2001/1st_ias/gender_differences082701.htm
2		National AIDS Treatment Advocacy Project. (2000). Lipodystrophy and women: How long after starting therapy does it take for lipodystrophy to develop; What is the probability of its development. Reports for the NATAP. 7th CROI: Retrieved July 2003 from http://www.natap.org/2000/7thcroi/50rpt31600.html
3		Tien, P.C., et. al. (2003). Incidence of lipoatrophy and lipohypertrophy in the women’s interagency HIV study. Journal of Acquired Immunodeficiency Syndrome: 34. 461-466.