Andra Stratton, president of Lipodystrophy United explains how lipodystrophy is often misdiagnosed or under-diagnosed.
Lipodystrophy is a rare medical condition in which persons have an abnormal distribution of fat in the body.
There are numerous types of lipodystrophy but the two most broad groups are generalized lipodystrophy and partial lipodystrophy.
Many people with generalized lipodystrophy look very muscular while those with partial lipodystrophy will look like they have an eating disorder. In either case, it can be years before these people are properly diagnosed, if they are diagnosed at all.
Persons 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. These people tend to look extremely muscular and healthy but internally, they have numerous health concerns.
People with partial lipodystrophy will often have fat accumulate in specific bodies areas but not in other areas (e.g., in the trunk and upper body but not in the limbs).
A diagnosis of lipodystrophy is generally a clinical diagnosis based on patterns (abnormal fat distribution, hypertriglyceridemia, acute pancreatitis, hyperphagia, etc).
For more information, visit www.lipodystrophyunited.org/
For information about other rare metabolic disorders, visit checkrare.com/diseases/