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Spreading awareness about lymphedema

It's a chronic disease affecting around 10 million Americans - and many don't understand what lymphedema is.
Credit: Rodriguez, Jacob

Note: Run/Walk to Fight Lymphedema and Lymphatic Diseases will be held this Sunday at Sloan’s Lake Park in Denver. For more information, visit this link.

“I would say I got bit by the lymphedema bug,” says Vicki Ralph with a warm smile.

Ralph is an occupational therapist at UCHealth. She treats lymphedema patients at multiple University of Colorado Hospital locations.

On this day, she had a rare break between appointments due to an intense snow storm.

“Lymphedema is the abnormal accumulation of protein in the tissue in the area underneath the skin and above our muscles,” Ralph explained. “Sometimes when you are born with it, it can be a genetic cause that maybe you don’t have any lymph nodes in a specific part of your body. Or, maybe you have too many of too few or for whatever reason, the lymph nodes are not functioning the way they should be.”

The chronic condition causes swelling which can appear on any part of the body. Skin in the affected area becomes thick, coarse and heavy.

“When you first get lymphedema, it might not show up in terms of a swelling," she said. "You might just find that an arm or a leg or your head and neck can feel heavy and achy and you might have some pain."

Although lymphedema affects up to 10 million Americans, according to the Lymphatic Education and Research Network, awareness of the condition is lacking.

“It’s so misdiagnosed," Ralph said. "People don’t know what it is."

There is no cure for lymphedema, so Ralph treats her patients with what she called the tried and true method - complete decongestive therapy. This includes a massage technique called manual lymph drainage and bandaging on the swollen part of the body.

Microsurgeries are an option for some lymphedema patients. Dr. Tae Chong, a plastic and reconstructive surgeon at the University of Colorado Hospital, specializes in one such surgery called lymphaticovenous bypass.

“Not enough people know that we are offering it,” said Chong, who is one of the few surgeons who perform that surgery in the state of Colorado.

“My hope and goal is to develop UCHealth as a lymphedema Center of Excellence," Ralph said. “In my mind, we would be at the forefront of research. We would be at the forefront of having all of our physicians understanding a basic understanding of what lymphedema is. We would have exceptional therapists who are all recognized by the Lymphedema Association of America and we would have outcomes that would show that this treatment works.”

Ralph said there are only a handful of physicians in the United States who specialize in lymphology.

“And that’s the goal for the Center of Excellence, to have physicians for patients to go to,” she said.

Overall, Ralph said she wants people who have lymphedema to be encouraged.

“I want people to know that there is hope," Ralph said. "That they don’t have to live with this condition. That there is a specific treatment that’s available to help them get the size of their limb down and to help them live an improved life so they can do the things that they love.”

Lymphedema Support and Information:

Lymphatic Education and Research Network or LE&RN is a non-profit organization founded to fight lymphatic diseases and lymphedema through education, research and advocacy. LE&RN has several chapters throughout the world. Here is a link to the Colorado chapter.

Klose Training is a training center for occupational therapists who treat lymphatic diseases.

For more information on Vicki Ralph, visit this link.

To follow lymphedema awareness advocate Angela Marquez, head to this link.

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