Lymphedema in People with Turner Syndrome: Causes and Symptoms

What is lymphedema?

Lymphedema is a long-term condition in which excess fluid collects in the tissues throughout the body. The fluid is called lymphatic, or lymph fluid (a clear or white fluid that contains white blood cells). Lymphatic fluid is made by the lymphatic system (network of vessels and tissues).

In many cases, the swelling is soft. It might involve the toes or the top of the hand. In some individuals, the swelling can feel firm or involve the legs and entire body. When there is edema in the neck, doctors call it nuchal edema.

Is lymphedema common in Turner syndrome?

Yes. About 2 out of every 3 people with Turner syndrome have lymphedema at some point during their lives. Most infants with Turner syndrome have some mild swelling of the hands and feet. The body usually absorbs the excess fluid during childhood.

What causes lymphedema?

When lymphatic vessels are blocked or if they do not form correctly, lymphedema may occur. There are 3 different channels for circulation in the body. These include:

• Arteries
• Veins
• Lymphatic vessels, which have very thin walls and carry lymphatic fluid

What are the effects of lymphedema?

The effects of lymphedema can include:

• Improvement in swelling, although there may be a small amount that continues
• Deeply set toenails and fingernails that may break easily
• Difficulty finding comfortable shoes because the feet may be swollen as well
• Infections (such as cellulitis, a bacterial skin infection)

Rev. 1/2023. Mass General for Children and Massachusetts General Hospital do not endorse any of the brands listed on this handout. This handout is intended to provide health information so that you can be better informed. It is not a substitute for medical advice and should not be used to treatment of any medical conditions.