What is Lipodystrophy?

lipodystrophy lip·o·dys·tro·phy (lĭp'ō-dĭs'trə-fē) 


noun 1. any condition resulting in bodily loss or redistribution of fat tissue 

2. defective metabolism of fat 


Lipodystrophy ¦ Treatment and Symptoms

People with lipodystrophy experience an uncontrolled loss of fat tissue, especially fat under the skin. This causes a drop in an important hormone called Leptin. Without enough fat tissue or Leptin, the body's system for regulating energy use falls out of balance. This system is called the metabolic system. Each person's metabolic system requires a specific amount of fat and hormones to work properly. This serious imbalance causes fat to accumulate where it in the blood or organs—which can lead to life-threatening complications. ​


Why the Houndstooth?

LU Logo

Awareness ribbons are used to show support or raise awareness for a cause. The founding members of LU discussed many options and ultimately choose the houndstooth pattern for a several reasons. Lipodystrophy has so many different health problems associated with the disease that if you mixed all of the colors that represent those causes, you’d likely get a shade of brown. Also, rare disease experts often discuss lipodystrophy patients, as zebras, with no two people presenting the same, but as we know, the zebra pattern is already rare’s “mother pattern” if you will. Hence came houndstooth! It’s a little like the zebra with the black and white (with a touch of red to show we mean business) and it also has unifying patterns. The four houndstooth in our logo represent the unification of the 4 main types of lipodystrophy.


Congenital Generalized Lipodystrophy (CGL)


Acquired Generalized Lipodystrophy (AGL)

Lawrence-Seip Syndrome. In the United States, the FDA approved Myalept as an effective treatment for AGL.

Familial Partial Lipodystrophy (FPL)

Acquired Partial Lipodystrophy (APL)

Rare Lipodystrophies 

  • Mandibuloacral Dysplasia (MAD)
  • Mandibular hypoplasia, Deafness, Progeroid (MDP)
  • Autoinflammatory Lipodystrophy
  • SHORT Syndrome
  • Inherited Neonatal progeroid syndrome - ​ (Wiedemann-Rautenstrauch syndrome)

Congenital/Inherited (CGL, FPL):

Parents are carriers of alterations in one of their genes. In CGL, the affected person inherits mutations in their genes from both parents. In FPL, the affected person has a 50% chance of inheriting the mutation in their genes from one parent.

Acquired (AGL, APL):

Panniculitis variety (type 1):The patient presents with painful and inflamed subcutaneous nodules or maculopapular lesions. Upon healing, depressed scars remain but the overlying skin is normal. New nodules appear and there is progression of subcutaneous fat loss.

  • Autoimmune disease variety (type 2): In this variety, the patients have past or present evidence of autoimmune diseases.
  • Idiopathic variety (type 3): This is the most common variety. The cause of this variety is not known.