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Dena, a teenage girl with congenital generalized lipodystrophy (CGL), listens to music while sitting on the porch. Dena, a teenage girl with congenital generalized lipodystrophy (CGL), listens to music while sitting on the porch.
After receiving the news about Denas diabetes, we met with a geneticist and then a pediatric endocrinologist who examined her. He said I think I know what she has. I think it's something called generalized lipodystrophy.

Who might I talk to if I suspect GL?

Because GL is so rare, many doctors are not familiar with it and may not recognize the signs and symptoms as GL. For this reason, your doctor may need to connect you with multiple specialists who can help answer different questions about your conditions, to get closer to a diagnosis.

Below are some of the doctors you may see along the way and what they specialize in. Click on or hover over each icon to read more about that specialist.

Endocrinologist

Endocrinologist

Doctor who focuses on treating disorders of the endocrine glands. This includes diabetes and other hormone disorders.

Cardiologist

Cardiologist

Doctor who focuses on conditions of the heart.

Lipidologist

Lipidologist

Doctor who focuses on conditions such as high cholesterol and high triglyceride levels.

Nephrologist

Nephrologist

Doctor who focuses on conditions of the kidneys.

Pediatrician/Primary Care Doctor

Pediatrician/Primary Care Doctor

Doctor who monitors your overall body and health.

Hepatologist

Hepatologist

Doctor who focuses on conditions of the liver.

Geneticist

Geneticist

Doctor who focuses on genetic diseases, or diseases people are born with, like congenital GL.

Faces of GL: Finally, all the pieces came together

So many specialists. So many possible diagnoses. For Dena and Raeya, different factors led to a GL diagnosis. Play video to learn more.

What to discuss with the doctor

If you suspect GL, download this GL Symptom Checklist and bring it to your next visit. Go through this checklist and make sure to point out any signs or symptoms that you have noticed.

The biggest advocate is you

For some, it can take a long time to get diagnosed with GL. Because GL is such a rare disease, many doctors do not know much about it and may not recognize the signs and symptoms of GL. This means that GL is often misdiagnosed with another disease along the way. For this reason, it is important for you to be a strong advocate for yourself (or your child). Be sure to tell each doctor what other doctors have told you about your (or your child’s) symptoms. Working with your doctors to put together the pieces of the puzzle will help you get closer to a diagnosis.

It is important to always keep pushing forward to get answers if you suspect GL. In the next section, Resources and Support, learn about different organizations that provide advice and support for people living with rare diseases.

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