Allyson Hannah has spent nearly every day of her life trying to manage lymphedema, and now she wants to share more information about the condition that affects as many as 10 million Americans.
Having lymphedema, she knows, has its challenges. As a toddler, Hannah’s parents had to find creative ways to keep her still enough to apply treatment. As a middle-schooler, Hannah would occasionally remove her compression garments, not fully comprehending the consequences.
As a teenager, Hannah excluded herself from teen activities so she wouldn’t have to explain her condition or be embarrassed by it. She avoided sports because she couldn’t wear most shoes. She often wore sweat pants to hide the treatment garments holding tightly around her left leg.
“I thought I had this obscure thing that no one else had,” Hannah said. “I was very self-conscious.”
As Hannah matured into adulthood, so did her attitude toward a disease that affects more people than are affected by Parkinson’s disease, multiple sclerosis, muscular dystrophy, AIDS and Alzheimer’s disease combined.
The lymphatic system is crucial in keeping the body healthy as it breaks down waste products and normalizes the balance of fluids and protein in tissue. But when the system is damaged — or if it didn’t develop properly, as was the case with Hannah — high-protein waste fluid starts to accumulate, causing swelling in a limb or other parts of the body.
Despite its seemingly obvious symptoms, lymphedema is underdiagnosed and undertreated in many people. Lymphedema Awareness Day is to help bring awareness to the community, educate people on treatment and products and raise awareness about proposed legislation that would require insurance to cover those costs.
Hannah has primary lymphedema, meaning she’s had it since birth. Secondary lymphedema is more common and happens when the lymph vessels or nodes are damaged due to a condition or procedure, such as cancer or from surgery or radiation for cancer.
For those like Hannah, the condition can go undiagnosed and untreated for years, said Joanne Beasley, a certified lymphedema therapist and supervisor of rehabilitation services at The Wellness Place at the UCHealth Cancer Center in Fort Collins.
“There is no obvious cause, and their limb volume gets bigger, slowly over time. Quite honestly, many people think they are just fat when in fact they are not,” she said. “That’s why it’s important to bring awareness to the condition and to let people know that it can be managed.”
When Hannah started attending Colorado State University — she’ll graduate next winter in sociology and Spanish — she decided she needed to take a more active role in managing her condition.
“I wanted to get involved, but my leg was holding me back,” Hannah said. “So, I took the initiative to better manage my lymphedema.”
Hannah’s left leg is most affected by the condition. The best method to manage lymphedema is combined decongestive therapy (CDT), the cornerstone of which is compression and may include everything from bandages to compression pumps and specialty garments. CDT also involves skin care, exercise and diet, as well as a specialized massage called Manual Lymphatic Drainage (MLD) to help shrink swollen limbs or the trunk, Beasley said.
By figuring out a management regimen that worked for her, Hannah found a freedom she hadn’t felt before. Last spring she studied abroad in Peru, staying with a non-English speaking host family for three months. She was fitted for compression garments before the trip.
Lymphedema responds well to compression and wrapping because the tightness encourages lymph fluid to flow back toward the trunk of the body. A lymphedema therapist is trained in proper wrapping techniques, as well as MLD massage. Off-the-shelf garments cost about $200 and custom-made garments cost $1,000 or more.
At Lymphedema Awareness Day, participants will learn about the latest technologies and garments for treating lymphedema. They’ll also learn about current legislation.
The Lymphedema Treatment Act is a federal bill that aims to improve insurance coverage for the medically necessary, doctor-prescribed compression supplies that are the cornerstone of lymphedema treatment. It was introduced into the House on Feb. 7, 2017.
“Our purpose is to educate the community,” Beasley said. “We have various educational talks targeting the public, not health care professionals. Although Lymphedema Awareness Day happens every year in Colorado, this is the first time it’s being held outside the metro-Denver area, so we are hoping that people in northern Colorado and Wyoming also find it accessible.”
For Hannah, the event is an opportunity to share a different message with those living with lymphedema — whether they were born with it or developed it later in life.
“You can do what you want to do,” she said. “It’s still hard managing the disease — it always will be — but I’ve been able to grow comfortable with who I am and accepting. That’s what I want to share with others.”