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What is lymphedema?

Lymphedema is a chronic, progressive disease that causes swelling because of non-functioning lymphatic vessels.

  • usually occurs in the arms and the legs
  • over time, fat and scar tissue develop and further increase the size of the affected limbs

Pioneering research

Scientists at Boston Children's Hospital are conducting research in our laboratory to determine causes for the progression of lymphedema. Randomized, clinical studies are under way to determine the best treatment options for children.

Lymphedema | Symptoms & Causes

What are the symptoms of lymphedema?

Children with lymphedema have swelling of a limb or an extremity. The genitalia or other tissues also may be affected. Lymphedema may also lead to skin changes, pain, difficulty with daily activities and infection.

What causes lymphedema?

We don't know the causes of primary lymphedema. Sometimes, primary lymphedema is hereditary.

Secondary lymphedema occurs after injury to the lymphatic system usually due to one of the following causes:

  • infection
  • cancer or a cancer-related treatment
  • a surgical procedure

Lymphedema | Diagnosis & Treatments

How is lymphedema diagnosed?

  • Clinical evaluation: Most children with lymphedema can be diagnosed by history and physical examination.
  • Radiographical evaluation: A diagnostic procedure called lymphoscintigraphy can confirm or exclude lymphedema. The study evaluates the function of the lymphatic system by following the uptake of a material injected into the affected area.
  • MRI may also be prescribed by your child's doctor.

How is lymphedema treated?

Non-surgical treatment

  • Lifestyle: Avoidance of trauma and diligent hygiene are examples of strategies to decrease complications associated with lymphedema.
  • Static compression: Custom garments will reduce the size of the affected extremity, slow disease progression, and improve symptoms.
  • Pneumatic compression: A mechanical pump can be used to reduce your child's limb size and improve symptoms.

Surgical treatment

  • Liposuction: For some children, liposuction can decrease limb size and improve symptoms.
  • Other types of surgery may also be recommended.

Lymphedema | FAQ

How common is lymphedema?

Primary lymphedema is rare; the incidence is about one in 100,000 children. About 90 percent of children with lymphedema have secondary lymphedema, which is much more common.

Can lymphedema be prevented?

Currently, there is no prevention for primary lymphedema. Avoiding secondary lymphedema is challenging; awareness of the condition and minimizing trauma to your child's underarm and groin can decrease the risk.

What conditions are associated with lymphedema?

Lymphedema is associated with recurrent infection, skin changes, functional disability, and low self-esteem.

When should a child be referred to a specialist?

Specialized, interdisciplinary clinics provide current, comprehensive care for children. Any child with a known or suspected diagnosis of lymphedema should be referred to a specialist.

What is the long-term outlook for a child with lymphedema?

Lymphedema is a chronic, progressive disease without a cure. However, non-surgical and surgical treatments are able to slow the progression of your child's condition, prevent complications, and improve symptoms.

Lymphedema | Programs & Services