Andra Stratton, president of Lipodystrophy United provides an overview of lipodystrophy.

Lipodystrophy is a rare medical condition in which persons have an abnormal distribution of fat in the body. That abnormality can present itself in many ways. People with generalized lipodystrophy have little or no adipose tissue in areas where it should exist (i.e., underneath the skin, around joints, etc) but do have fat accumulating in other areas (i.e., in muscle, heart, liver, etc) that can cause damage. Others may have partial lipodystrophy where adipose tissue may store in the trunk and upper body but not in the limbs.

Stratton said, “What science is discovering is that your adipose tissue needs to be evenly distributed throughout your body or ‘ normally’ distributed throughout your body to function,” adding, “When it’s disproportionate it doesn’t function normally so what that results in is a visual phenotype that’s very interesting to see.”

Stratton further noted that, “Because we look very muscular there’s kind of a confusion that we’re very healthy but internally, we’re quite obese or we behave as an obese body would.” Pain, hyperphagia, and other symptoms are also common in people with lipodystrophy.

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