What is Lipodystrophy?

Lipodystrophy is a general term for a collection of disorders involving the complete (generalized) or partial loss of fat tissue. This disorder can be inherited as a generic disorder (congenital) or acquired, at any age, due to an autoimmune disorder. Patients with severe, generalized lipodystrophies share an inability to produce enough of the hormone leptin, which is made by fat tissue. Leptin regulates appetite in the body. Leptin deficiency can lead to excessive hunger, difficult to control diabetes, and extremely high triglycerides, as well as other metabolic problems.

How common is Lipodystrophy?

Generalized forms of lipodystrophy are extremely rare. Acquired generalized lipodystrophy has been reported in approximately 100 - 250 individuals, and is more common in women than men. There have been approximately 300 cases of congenital generalized lipodystrophy reported with an estimated worldwide prevalence at roughly 1 in 10 million individuals.1

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  • 1Garg, A. Acquired and Inherited Lipodystrophies. NEJM 2004; 350:1220-34


What are the symptoms of Lipodystrophy?

Signs and symptoms related to generalized lipodystrophy include, but are not limited to:

  • Near total absence of body fat
  • Excessive appetite in infants and children
  • Acanthosis nigricans: abnormally increased coloration and thickening of the skin
  • Fat accumulation in the liver (hepatic steatosis)
  • Diabetes
  • High triglycerides, leading to risk of pancreatitis
  • Imbalance of sex hormones in women (polycystic ovary syndrome)

How is it diagnosed?

A variety of tests can be used to aid in the diagnosis of lipodystrophy including assessment of the amount of leptin in the blood. For individuals with congenital lipodystrophy, genetic testing can detect mutations specific to the disorder to confirm the diagnosis in most cases.



The following specialty medications are available at Accredo, a specialty pharmacy for Lipodystrophy.

Medication Manufacturer
Myalept® (metreleptin) Amryt Pharmaceuticals, Inc.

Financing Your Care

Financial assistance is available to support your drug costs including manufacturer and community programs. Accredo specialists are available to assist in finding the right program for you.

Financial Guidance

Life-saving specialty medication can be expensive. Learn how the Accredo teams help individuals find ways to afford the medication they need to survive in this video.

Find Support

Lipodystrophy Organizations

There are many organizations that support research and advocacy for Lipodystrophy. See below for a few of those organizations.

Support Organizations

Meet the Team

Accredo’s Lipodystrophy care team is dedicated to serving you and understands the difficulty of this complex condition. Our expert clinicians are always available, 24 hours a day, seven days a week, to answer any questions.

Why We Do It

Accredo supports patients with chronic and complex conditions and helps them live their best life. Watch our video to learn why we do what we do for our patients.

Why We Do It video transcript

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