Lymphedema-distichiasis syndrome

Lymphedema-distichiasis syndrome (LDS) is a rare inherited condition that mainly affects the lymphatic system and the eyelids. The lymphatic system is a network of vessels that helps drain fluid from body tissues. In LDS, this system does not work properly, causing fluid to build up — most often in the legs — leading to swelling called lymphedema. This swelling usually starts in the lower legs and ankles and can become permanent over time if not managed. The 'distichiasis' part of the name refers to an extra row of eyelashes that grows from the inner edge of the eyelid, pointing toward the eye. These extra lashes can scratch the surface of the eye and cause irritation, redness, and even damage to the cornea. Beyond swelling and eyelash problems, some people with LDS also develop heart valve abnormalities (most often a condition called mitral valve prolapse), a curved spine (scoliosis), or a condition where the spine's protective covering leaks fluid (epidural cysts). Not everyone has all of these features — symptoms can vary quite a bit from person to person, even within the same family. There is currently no cure for LDS, but treatments are available to manage symptoms. Compression garments, physical therapy, and careful skin care can help control lymphedema. The extra eyelashes can be treated by an eye specialist using methods like electrolysis, cryotherapy, or surgery. Regular monitoring by a team of specialists is important to catch and manage complications early.

Bring these to your next appointment

• Q1.Which of my symptoms are most likely to get worse over time, and what can I do now to slow that down?,Should my children or other family members be tested for FOXC2 changes?,What type of lymphedema specialist should I see, and how often?,Do I need a heart scan, and how often should my heart be checked?,What are the warning signs of a serious infection in my swollen leg, and when should I go to the emergency room?,Are there clinical trials or research studies I could join?,What support resources or patient groups are available for people with lymphedema-distichiasis syndrome?

Common questions about Lymphedema-distichiasis syndrome