“Around age 10, Troy lost the fat all over his body and his stomach stuck way out. He was hungry all the time. ”

“Around age 10, Troy lost the fat all over his body and his stomach stuck way out. He was hungry all the time. ”
About generalized lipodystrophy (GL)
Generalized lipodystrophy (GL) is a disease in which people have little to no fat tissue all over the body.
means all over
means fat
means abnormal loss of tissue
GL is a rare disease, which means that only a small number of people are affected by it. For this reason, it can be difficult to diagnose.
Generalized lipodystrophy is one type of lipodystrophy. There are other types of lipodystrophy, and each type has its own set of signs and symptoms. This website will focus only on generalized lipodystrophy.
Faces of GL: Stories of life before a GL diagnosis
People often asked why Dena and Raeya were so skinny or so muscular, but before they learned that they had GL, there were no answers. Play video to learn more.
Little to no fat all over the body—isn’t that a good thing?

In people with GL, having little to no fat tissue can affect the way they look. But there is more to not having fat than meets the eye. Our bodies also need fat tissue because it makes hormones. One of these hormones is called leptin, and it plays a very important role in the body.

Leptin is important because it helps control metabolic processes in the body. Some of these processes are

  • helping to control how the body manages fat.
  • helping the body respond to insulin. Insulin is a hormone produced by the pancreas that helps manage levels of sugar in the blood.
Having little to no fat tissue leads to having little to no leptin. Leptin is a hormone produced by fat tissue. Without enough leptin, people with GL can experience complications of high triglycerides and high blood sugar. 
There are 2 types of GL: congenital GL and acquired GL

You may hear congenital GL referred to as Berardinelli-Seip syndrome and acquired GL referred to as Lawrence syndrome.

The table below outlines some differences between the 2 types. Regardless of type, everyone with GL has little to no fat all over their bodies, and little to no leptin.

Congenital GL
Acquired GL

A congenital disease is one you are born with
An acquired disease is one that develops any time after birth

At birth or soon after birth
In childhood or teenage years

Congenital GL develops because of a genetic mutation, or problem, with a gene
In some cases, acquired GL develops because of a problem with the body’s immune system. This is called an autoimmune disorder. In other cases, the exact cause of acquired GL is not known

What makes GL even more complex is that there are differences within each type. There are at least 4 genes with mutations that cause congenital GL. Acquired GL is often associated with autoimmune disease. The cause and signs/symptoms of GL can be different in every person living with it. 

In the next section, Could it Be GL?, we talk about the physical signs and symptoms of GL, or things you may notice.