Advocating for herself: Drew takes lymphedema in stride

Five-year-old Drew Rossi has no problem explaining why she wears a daily compression garment. “I have lymphedema,” she tells anyone who asks about the compression sock on her left leg. “She took this diagnosis and ran with it,” says her father, Don. “She’s already a great advocate.”

Don and his wife, Kerri, knew that something was different about Drew almost as soon as she was born. Her left foot was noticeably swollen, and the couple wondered if she had injured it during delivery. When they couldn’t get answers at their local hospital, they made an appointment with a specialist in vascular anomalies in New York — but a diagnosis remained elusive. Unnecessary blood tests added to the family’s stress, and the swelling began spreading to other parts of Drew’s body.

A search for answers

Meanwhile, Kerri, who has a medical background, began to suspect that her daughter had lymphedema. In this chronic, progressive condition, the lymphatic vessels — vessels that move fluid called lymph away from the body’s tissues — don’t function properly. This leads to swelling, typically in the arms and legs. Lymphedema can also cause discomfort, changes to appearance, and an increased risk of infection (cellulitis) in affected areas.

Kerri’s research ultimately led her to Dr. Arin Greene, director of the Lymphedema Program at Boston Children’s Hospital. When Drew was 16 months old, the family traveled to Boston to meet with Dr. Greene. “He took about one step into the exam room and knew what it was,” says Kerri. After confirming his suspicions with testing, Dr. Greene arrived at a diagnosis: primary lymphedema, a form of the condition that has no known cause and is often present at birth.

Managing a lifelong condition

While Kerri and Don were relieved to finally put a name to the problem, the reality of having a child with a chronic condition also set in. There is no cure for primary lymphedema; it is primarily managed using compression regimens. The condition can also worsen over time. “It’s not life threatening, but it never goes away. Drew will have to manage this her entire life,” says Don. “That’s the hard part for us.”

So far, though, Drew is taking things in stride. She has annual check-ins with Dr. Greene, sees an occupational therapist for lymphatic drainage massage, and wears a compression sock to keep swelling in check. She recently attended a camp for kids with lymphedema and enjoys swimming, hiking, playing soccer, and hanging out with her older sister and dog.

And Drew’s advocacy is a family affair: The Rossis have spoken at symposiums about their experience and have spoken with Dr. Greene about participating in his research on the genetic underpinnings of lymphedema. “We don’t want anyone else to have go through what we went through to get a diagnosis,” says Kerri. “And we want other families to know they aren’t alone.”

Learn more about the Lymphedema Program in Boston Children’s Vascular Anomalies Center.