There are few things that look quite like it. An arm or leg or foot – or all three - will swell and swell and swell until it looks like it may burst.
And, according to Lymphedema patient and president of the Lymphedema Association of Nova Scotia (LANS) Karen Bingham, “it feels like it’s going to explode.”
Bingham says her feet to her knees are especially prone to lymphedema and the associated swelling. While not all people with lymphedema experience pain, Bigham says her acute swelling is “painful 24/7.”
Lymphedema is a flaw in the lymphatic system, Bingham explains, preventing lymphatic fluid from moving through the body. The fluid builds and causes swelling.
Bingham was born with lymphedema, known as primary lymphedema. Patients may also acquire the chronic condition (secondary lymphedema) if the lymphatic system is damaged by, for example, radiation or an accident.
There is no cure for lymphedema. There are treatments to help manage the symptoms, but Bingham says patients “pay out of pocket” for the pricey supplies required for the treatments, including compression wraps and specialized socks (starting at about $800 per purchase.) Moreover, fees associated with massage therapy or clinics offering drainage therapy are not covered by NS Health.
As a volunteer, Bingham founded the Lymphedema Association of Nova Scotia for very specific reasons. First, to “make people realize they are not alone.” Bingham says people “suffer in silence and isolation with this lymphedema,” and that, “it’s a disease no one talks about.”
Bingham is working to raise awareness in Nova Scotia about lymphedema and best treatment practices. Directed at patients and health professionals, the association produces a seminar about the therapies and products available. Bingham believes it is vital to invite experts in lymphedema and patients living with lymphedema to speak.
Bingham says she’s learned many lessons from her experience as a patient and advocate, and from the many stories shared with her by people living with lymphedema. These lessons inform the pamphlets and other media published and distributed by LANS.
Lessons include, for example, that diuretics will not help lymphedema (and may cause harm) so should be avoided; and areas of the body affected by the disease should not take a needle of any kind, nor should the limbs be cuffed for a blood pressure reading.
“The big thing,” says Bingham, “is infection.”
With a compromised lymphatic system, patients are prone to infection.
“A small scratch, a bug bite, an ingrown toenail,” says Bingham, “can be potentially deadly to someone with lymphedema.”
To make matters worse, the more times a patient must take antibiotics to fight an infection, the less effective the antibiotics become. After a while, says Bingham, some patients end up with cellulitis and some cannot fight the infection.
Bingham carries antibiotic cream and a prescription for antibiotics. When she feels any indication of infection, she starts the antibiotics immediately to “get on top of it,” noting, “the infections kill us.”
The third piece of the Lymphedema Association of Nova Scotia is fundraising. The association raises money to produce and print hand-outs, organize seminars, and maintain their website, including links to research, tips and a list of therapists in Nova Scotia.
For more information, call 902-401-3683 or visit www.LymphedemaNovaScotia.com.