Children's Hospital Boston  300 Longwood Avenue
Boston, MA 02115
(617) 355-6000
 X
My Child Has:
Lymphedema
What is lymphedema?
Lymphedema is a chronic, progressive disease which causes swelling, usually of the arms or legs, because of non-functioning lymphatic vessels. Over time, fat and scar tissue develop and further increase the size of the affected extremity.
What causes lymphedema?
Primary lymphedema is idiopathic, which means the cause is unknown. Sometimes, primary lymphedema is hereditary. Secondary lymphedema occurs after injury to the lymphatic system usually due to infection, malignancy, a surgical procedure, or cancer-related treatment.
How common is lymphedema?
There are 140 to 250 million persons affected with lymphedema worldwide. Primary lymphedema is rare; the incidence is 1.2 per 100,000 persons less than 20 years old. Secondary lymphedema is much more common and comprises 90% of patients with lymphedema.
What are the symptoms of lymphedema?
Patients with lymphedema have swelling of an extremity with involvement of the hand or foot. The genitalia or other tissues also may be affected. Lymphedema may lead to skin changes, pain, difficulty with daily activities, and infection.
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 the axilla 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 patients. Any individual with a known or suspected diagnosis of lymphedema should be referred to a specialist.
How is lymphedema diagnosed?
Clinical Evaluation
Most patients with lymphedema can be diagnosed by history and physical examination.

Radiographical Evaluation
Lymphoscintigraphy can confirm or exclude lymphedema. The study evaluates the function of the lymphatics by following the uptake of a material injected into the affected area. MRI may also be used for diagnostic purposes.

How is lymphedema treated?
Non-operative management
o Lifestyle - Avoidance of trauma and diligent hygiene are examples of strategies to decrease complications associated with lymphedema.
o Static compression - Custom garments will reduce the size of the affected extremity, slow disease progression, and improve symptoms.
o Pneumatic compression - A mechanical pump can be used to reduce limb size and improves symptoms.

Operative management
o Liposuction - For properly selected patients, liposuction can decrease limb size and improve symptoms.
o Other types of operative intervention may be indicated for some patients.

What is the long-term outlook for a child with lymphedema?
Lymphedema is a chronic, progressive disease without a cure. However, non-operative and operative management are able to slow the progression of the condition, prevent complications, and improve symptoms.
What research is being done?
We are conducting basic science research in our laboratory to determine causes for the progression of lymphedema. Randomized, clinical studies are underway to determine the best treatment options for patients.
 X
Programs that treat this condition:
Lymphedema Program
| More
 X
 X The information on this website should not be taken as medical advice,
which can only be given to you by your personal health care professional.
 X
 X Copyright © Children's Hospital Boston. All rights reserved.