Lymphedema is common in individuals with Turner syndrome, affecting about 2 out of 3 people in their lifetime. Lymphedema is commonly misunderstood and underdiagnosed, needing more research in diagnostic tools and individualized treatment.
This blog will give an introduction into the lymphatic system, lymphedema, and how to spot early signs. A second part will highlight clinical diagnosis, treatment options, and advocacy.
Information presented in this article comes from the webinar “Understanding Lymphedema.”
What is the lymphatic system?
The lymphatic system is a network of vessels, nodes, and organs that are essential to our immune function. We make 4-6 liters of lymphatic fluid per day and most of it is excreted through our urine.
Lymphatic vessels move lymphatic fluid throughout our body. Lymph nodes are filtration centers located in the neck, armpit, abdomen, and groin. They evaluate our fluid for viruses, bacteria, cancer, and damaged cells.
What is Lymphedema?
Lymphedema can be defined as persistent swelling for more than 3 months. Protein rich fluid accumulates between cells causing swelling.
Lymphedema is divided into 2 categories:
- Primary lymphedema occurs when there are developmental abnormalities in utero. Lymphedema in TS is considered primary lymphedema as it originates in fetal development.
- Secondary lymphedema occurs when there is damage to the lymphatic system. This can be due to cancer-related surgery or infection.
Lymphedema and TS
In Turner syndrome, lymphedema usually presents first at the back of the hands or tops of the feet. Research shows this occurs due to the lymphatic system being underdeveloped, incorrectly developed, or pieces within are not working well. Lymphedema can resolve by age 2 for some children, but it can reoccur later in childhood and adulthood.
Early Identification
Early recognition of lymphedema is important for successful management. Some signs of lymphedema to look for in a child include:
- Persistent puffiness in hands, feet, or limbs
- Skin feels thick and dough-like and pits when applying pressure
- Child may tell you their limb feels “tired,” “weird,” or “heavy”
- Reluctant to certain activities, like holding utensils or participating in PE
Motor Development and Lymphedema
Lymphedema can affect how children interact with their environment. Some children can experience challenges with grabbing or holding objects, crawling, and fine motor skills. Early intervention is important for motor development and function.
Lymphedema is chronic and requires management, but early intervention improves outcomes significantly. In part two of this blog, we will cover clinical assessment, treatment, and how to advocate for yourself or your child.
To learn more about Lymphedema & TS, watch the free webinar on our website.
Written By Simrita Hemrajani, TSF Volunteer Blog Writer and designed by Adrianna Verzolini
© Turner Syndrome Foundation, 2026
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