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About Lipodystrophy

Lipodystrophy is a group of rare syndromes often associated with metabolic complications. The severity of these complications may vary depending on the type of lipodystrophy.

So what causes these complications to happen in lipodystrophy? One of the known causes is related to fat tissue in the body. Fat tissue is important because it creates the necessary hormones required to keep the body healthy. Since people with lipodystrophy experience a loss of fat tissue, specifically fat tissue just under the skin, the amount of hormones produced is not enough to keep their bodies functioning properly.

Whether the lipodystrophy is something that you are born with or something that has developed over time, all types of lipodystrophy share this loss of fat tissue. The difference is how each type loses the fat tissue. Fat loss that happens from all over the body is known as "generalized" lipodystrophy.

Lipodystrophy is a complex disease that may take a while to understand. Don't give up! Knowing more about your health will help you feel more in control and can help you better communicate with your healthcare providers. You can always ask your healthcare team for more details about anything you don't understand.

Lipodystrophy is a group of rare syndromes often associated with metabolic complications.

Reaching Out

Your friends, family, and healthcare providers may not know a lot about lipodystrophy due to the rarity of the disease. And not being able to find information can be frustrating.

Luckily there are organizations dedicated to providing information about diseases like lipodystrophy. These groups often have ways for people affected by rare diseases (people living with the condition and their loved ones) to connect with one another to share experiences and tips.

A list of these organizations is provided below.

Genetic and Rare Diseases Information Center (GARD)

The National Human Genome Research Institute and the Office of Rare Diseases Research —2 agencies at the National Institutes of Health (NIH)—created GARD in 2002 to help people find useful information about genetic and rare diseases like lipodystrophy. GARD provides access to experienced information specialists who can furnish current and accurate information—in both English and Spanish—about genetic and rare diseases.

Genetics Home Reference

Provides information about genetic diseases to patients and families.

Lipodystrophy United

Lipodystrophy United is an organization of committed individuals living with lipodystrophy.

NIH Office of Rare Diseases Research (ORDR)

Provides information for people with rare diseases, like lipodystrophy.

National Organization for Rare Disorders (NORD)

Dedicated to helping Americans with rare diseases like lipodystrophy and the organizations that serve them, through programs of education, advocacy, research, and patient services.

RARE Project

RARE Project exists to raise rare disease awareness, unify, equip, and empower a vibrant global rare disease community, and fund innovative programs.