Rare diseases of the lymph system

Lipedema is characterized by symmetric enlargement of the limbs, generally affecting the lower extremities extending from the hips to the ankles secondary to the deposition of fat; upper extremities are affected in 30% (1) of the cases.

Lipedema is not rare and not caused by a disorder of the lymphatic system, but is commonly misdiagnosed as bilateral lymphedema, extreme cellulitis, or morbid obesity.

Most commonly used synonyms for lipedema include:

  • Adiposalgia/Adipoalgesia
  • Adiposis dolorosa
  • Lipalgia
  • Lipomatosis dolorosa of the legs
  • Lipodystrophia dolorosa
  • Painful column leg

This condition almost exclusively affects women; according to an epidemiologic study by Földi E. and Földi M.(2), lipedema affects 11% of the female population, and literature suggests that lipedema is associated with extensive hormonal disorders or liver dysfunctions if present in males.

Lipedema is a painful fat disorder and if left untreated can cause multiple secondary health problems, to include mobility issues and lymphedema. The quality of life, emotionally and physically, for individuals affected by lipedema is often decreased due to the fact that the condition is typically dismissed as simple obesity by clinicians unfamiliar with the symptoms.

The underlying cause for the development of lipedema remains unknown; it is thought to be associated with hormonal disorders and can be hereditary with 14% of affected individuals having a family history of lipedema (3). Lipedema can develop early in puberty; however, the mean age of diagnosis is approximately 35.

Lipedema can be diagnosed based on clinical criteria (history, typical clinical features) and by physical examination rather than with diagnostic tests.

Clinical Features:

  • Symmetrical distribution of fat between the hips and ankles, the feet are not involved
  • Ring of fatty tissue overlapping the tops of the feet
  • Tissue has a soft rubber-like feel in early stages
  • Initially, the skin color is normal
  • Typical bulges of fatty tissue on the medial thigh (above the knee and close to the groin) are seen in later stages
  • Small fatty lumps (nodules) within the tissues start to form in later stages
  • In the early stages of lipedema the upper part of the body may be slender
  • Weight loss does not have an effect on the areas affected by lipedema
  • Swelling (edema) is common in the second half of the day and includes the feet, but decreases in the early stage with elevation and night-time rest
  • Pain, tenderness, sensitivity to pressure
  • Easy bruising

For the purpose of this forum, the additional swelling that develops in the later hours of the day in lipedema is of particular interest and is indicative for the involvement of the lymphatic system if lipedema remains without proper management.

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