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Dwanna, a woman with congenital generalized lipodystrophy (CGL), stands in the kitchen cutting vegetables.Dwanna, a woman with congenital generalized lipodystrophy (CGL), stands in the kitchen cutting vegetables.
My younger sister has generalized lipodystrophy too. Were both muscular and have big hands and feet. Growing up, we were both taller than our classmates. Kids used to call us names.

Recognizing signs and symptoms of GL

In GL, there are signs and symptoms that you may notice, and others that only your doctor may be able to detect.

In this section, we will cover the most common signs and symptoms of GL, but it is important to know that you (or your child) may not experience all of what is covered here. In fact, no 2 people with GL will experience the disease the same exact way. Some people with GL will experience only a few signs and symptoms, while others will experience many. Some people may experience these earlier in childhood, while others may not see them until later in life. The disease can be different in each person affected by it, which can make it difficult to diagnose.

Faces of GL: Different people, different GL symptoms

Dena and Raeya were always hungry and had veins that stuck out, but all of their GL symptoms weren’t the same. Play video to learn more.

Things you may notice

Two of the most noticeable signs and symptoms of GL are looking muscular or unusually lean and being hungry all the time, even after eating a full meal. This hungry feeling is called hyperphagia.

No matter how much food people with GL eat, they will always look muscular or unusually lean.

Click on or hover over each icon below to learn about the other physical signs and symptoms that people with GL can have.

    • A round belly

    A round belly

    A round belly

    The belly can become enlarged due to fat building up in organs, such as the liver due to an inadequate amount of fat tissue on the body. As a result, fat is stored in the wrong places, such as in some organs. 

    • Enlarged hands, feet, and jaw

    Enlarged hands, feet, and jaw

    Enlarged hands, feet, and jaw

    These are called acromegaloid features. The exact cause of these enlarged features in people with GL has not yet been found. Some experts believe that the hands, feet, and jaw are larger in people with GL because high levels of insulin may cause certain parts of the body, including bones, to grow more quickly than they should.

    • Enlarged or visible veins

    Enlarged or visible veins

    Enlarged or visible veins

    This is called phlebomegaly. The exact cause of enlarged veins in people with GL has not yet been found. Some experts believe that people with GL have visible or enlarged veins because they have little to no fat tissue all over the body.


    • Dark, velvety patches of skin

    Dark, velvety patches of skin

    Dark, velvety patches of skin

    These patches form in areas like the neck, groin, armpits, and under the breasts. They are called acanthosis nigricans. The dark patches can form due to the body having too much insulin. The body’s inability to respond to insulin is called insulin resistance.

    • Sudden breakout of bumps

    Sudden breakout of bumps

    Sudden breakout of bumps

    These bumps can sometimes be itchy and form on areas of the body like the hands, feet, arms, legs, and buttocks. They are called eruptive xanthomas. These bumps form due to high triglycerides.



    • Advanced bone age

    Advanced bone age

    Advanced bone age

    Kids with congenital GL may grow tall more quickly than other kids their age, but they will not gain weight at the same rate that their bones are growing. This is called advanced bone age.



Having little to no fat and looking muscular can be more noticeable in certain parts of the body than others, such as in the arms, legs, and face. Some people with GL have a round belly because of enlarged organs, but this should not be confused with fat in the belly.

Things you cannot see

When the body does not have enough leptin, certain metabolic processes are not controlled. This can lead to serious complications. Click on or hover over each icon below to learn about these complications.

    • High triglycerides

    High triglycerides

    High triglycerides

    High triglycerides are a form of fat in the blood. High triglycerides may be associated with pancreatitis, or inflammation of the pancreas.

    • Insulin resistance

    Insulin resistance

    Insulin resistance

    When the body does not respond to its own insulin, this is called insulin resistance. Over time, the body’s inability to produce enough insulin to overcome insulin resistance can lead to diabetes.

    • High blood sugar

    High blood sugar

    High blood sugar

    High blood sugar may indicate diabetes, which may increase your risk of kidney disease, eye disease, heart disease, and nerve damage, especially in your feet and legs. This is also called high blood glucose.

As a result of their extreme hunger, people with GL may eat a lot. Because of this, extra fats and sugars from the food they eat can contribute to these problems, resulting in a continuous cycle.

If I cannot see these complications, how do I know they are happening?

Blood tests can show what is happening inside your (or your child’s) body. Read below to learn more about some common blood tests and what they can reveal about GL.

Triglyceride levels: how to measure them and what they mean

Triglyceride levels are measured through a fasting triglycerides blood test. A fasting triglycerides blood test is performed after not eating, or fasting, for at least 8 hours, and measures the level of fat in the blood. It is important to fast because fats from foods eaten within 8 hours before the test can affect the test results. The table below explains different triglyceride ranges and what they mean in people of different ages.

Triglyceride levels (mg/dL)
In children younger than 10 years In children 10-19 years Adults
Less than 75 Less than 90 Less than 150
75 to 99 90 to 129 150 to 199
Greater than or equal to 100 Greater than or equal to 130 Greater than or equal to 200
Greater than 500 Greater than 500 Greater than 1000
What they mean
Healthy triglycerides
Borderline-high triglycerides
High triglycerides
Very high triglycerides

High triglycerides have been associated with inflammation and swelling, of the pancreas.

Blood glucose levels: how to measure them and what they mean

Blood glucose levels are typically measured using 2 common blood tests: a fasting blood sugar test and an A1C test.

A fasting blood sugar test, also known as fasting plasma glucose (FPG) test, is performed after not eating, or fasting, for at least 8 hours and measures glucose levels in the blood at the time of the test. It is important to fast because sugars from foods eaten within 8 hours before the test can affect the test results. The table below outlines what different fasting blood glucose measures mean.

Blood glucose level (mg/dL) What it means
70 to 99 Healthy fasting blood glucose level
100 to 125 Fasting blood glucose level in people at risk for getting diabetes
Greater than or equal to 126 Fasting blood glucose level in people who have diabetes

An A1C test is a blood test that measures an average blood glucose level for the past 2 to 3 months. This may be a good test for a person with GL because it does not require 8 hours of fasting. The table below explains what different A1C measures mean.

A1C measure (%) What it means
Less than 5.7 Healthy A1C
5.7 to 6.4 A1C in people at risk for getting diabetes
Greater than or equal to 6.5 A1C in people who have diabetes

In the next section, Getting to a Diagnosis, learn about the different specialists you may see and how to talk to them about the signs and symptoms of GL, as well as important blood tests and what they mean. You play an important role in getting the appropriate diagnosis.

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