Lymphedema is a serious health issue that many people live with, yet it is often misunderstood.

Lymphedema develops when lymph vessels or lymph nodes in the lymphatic system are missing or damaged. This causes lymph fluid to build up and creates swelling. This swelling is known as lymphedema, which commonly develops in the arms and legs. While many doctors are able to identify severe cases of lymphedema, many don’t keep up with the latest developments.

“Lymphedema is a disorder that unfortunately a lot of providers don’t have a lot of experience taking care of,” said Dr. Gregory Piazza, cardiovascular medicine specialist at Brigham and Women’s Hospital. “They might be able to pick out elephantiasis, but the subtler forms of lymphedema, they may miss.”

In recent years, there have been many new developments in the knowledge and treatment of lymphedema.

“There hasn’t, until recently, been a lot of research into why patients develop lymphedema and what genes are involved,” explained Dr. Piazza. “Recently, they’ve identified a number of genes that contribute to lymphedema at birth or lymphedema in young patients. They have come to understand that any gene that affects either the development of the lymph vessels or the development of the lymph nodes can lead to lymphedema.”

Doctors now have a better understanding of why people develop lymphedema and what types of risk factors can pre-dispose patients to it. These risk factors include radiation, recurrent infections to the limbs, cancer surgeries, injury, trauma, genetics, and more. Patients who have experienced deep vein thrombosis (DVT) are also at a higher risk of developing severe venous insufficiency and eventually lymphedema. Medical professionals now have more knowledge about how the severity of lymphedema should be graded and how it can be treated.

“Most clinicians, if you ask them how to treat lymphedema, will say ‘I don’t think there is much we can do about it,’ but there is actually quite a bit you can do,” Dr. Piazza said, explaining the different forms of treatment available to patients. “Compression garments make a big difference. When the limb is too big to fit a compression garment, we’ll do a type of physical therapy called manual lymphatic decompression. This is a gentle type of massage that activates the surface lymph vessels and gets them contracting on their own. There are also wraps that can be put on between physical therapy sessions to continue the ‘milking’ of the lymphatic fluid back to the patient’s central lymphatic system.”

“There are also some experimental treatments that look quite promising. For example, liposuction actually seems to work,” he continued. “There are other treatments that involve transplanting lymph nodes into the limb to help clear out the lymph fluid. There’re a lot of innovative new treatments, and they are even looking at medications that might be helpful.”

“It’s a common disease that primary care doctors, cardiovascular specialists, and other providers will come into contact with,” said Dr. Piazza. “You want to be up-to-date on the current trends and how we’re understanding the disease better.”