Patients and Carers

Lipodystrophy is a condition caused by uncontrolled loss of fat tissue that is not due to dieting. Most of the fat loss occurs under the skin. This results in reduced activity of a hormone called leptin that is normally produced by fat cells. Loss of leptin activity causes the body’s metabolic balance to become disturbed and results in excessive hunger and food consumption leading to deposition of those excess calories as fat in certain organs such as the liver and heart. In addition, very high levels of fat circulate in the blood. These metabolic changes lead to increased levels of sugar in the blood (diabetes) that can be very difficult to control. Life threatening complications can arise including inflammation of the pancreas and progressive liver disease.

Doctors categorize lipodystrophy according to whether the fat loss affects the entire body (“generalised lipodystrophy”), or only certain regions (“partial lipodystrophy”). These two categories are further divided into genetic causes (called “congenital or familial”) and non-genetic or “acquired”.