CALGARY- Under a clear blue sky, four-year-old Ben Nedjelski runs happily from slide to swing to teeter totter. His enthusiasm is as easy to spot as the bandage on his arm.
“He has had lymphedema since birth,” Ben’s mom Katie explains. “In the hospital, we noticed his one arm was bigger than the other.”
A healthy lymphatic system circulates fluid throughout the body but with lymphedema that system doesn’t work properly. Fluid pools in arms or legs, causing the limb to swell well beyond its normal size.
“If people do not get treatment it just gets worse and worse,” says Diane Martin, president of the Alberta Lymphedema Association.
Martin developed lymphedema as a result of breast cancer treatment. She had to have lymph nodes removed surgically and received radiation. Since 2006, Alberta Health Service has covered therapy for cancer-related lymphedema—but for patients who were born with the disease, therapy has not been covered.
“We could easily spend 10 grand a year,” Katie says. “The lymph drainage is expensive, it’s basically the cost of a massage appointment and the more you do it the better the results.”
Patients with lymphedema also need to wear special pressure garments to keep swelling down. The cost of the garments can also add up.
The Alberta Lymphedema Association has been calling for more coverage since 2003. In 2010, Alberta Health Services formed the AHS Lymphedema working group, and earlier this month AHS announced it will be expanding coverage and services for patients with primary lymphedema.
“It became evident that they’ve not been getting the care that they need,” Ted Braun, AHS Medical Director for the Calgary Zone explains. “So, Alberta Health Services is going to be working with those effected and develop services to meet those needs.”
Braun hopes new funded therapy options will be in place for primary lymphedema patients this fall.
Click here for more information on lymphedema therapy options.
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