Meet Your Neighbor: Widow's goal to improve life with lymphedema

Sue Guinn Legg • Feb 24, 2014 at 11:49 AM

When Jennifer Hovatter’s husband, Thomas, died from complications of lymphedema in June 2007, her life spun off in a new and purposeful direction.

Set to help others who suffer from the same painful, disabling and potentially fatal condition, Hovatter organized a local support group for lymphedema patients and their families.

She launched the Thomas Hovatter Lymphedema Foundation in her husband’s honor and hosted awareness events to educate everyone about the need for increased lymphedema research and more insurance coverage for its suffers.

With the help of a group of like-minded friends in 2009, Hovatter convinced the state’s lawmakers and governor to proclaim the June 18 anniversary of her husband’s death Lynphedema Awareness Day in Tennessee. And two years later, she saw the state go on to proclaim the entire third week of June as Lymphedema Awareness Week.

On a personal level, Hovatter’s mission is to establish a local lymphedema clinic, and in December she took a significant step toward that goal, earning her bachelor’s degree in public health from East Tennessee State University.

Her next step is graduate school and beyond that a doctorate in psychology she will use to help lymphedema patients cope with the mental stresses unique to their condition.

“It’s really sad, especially for children who classmates tease them because don’t understand why their limbs are so gigantic,” she said.

The provisions of Tennessee’s two lymphedema awareness proclamations spell out the motivation behind Hovatter’s work most clearly:

n Lymphedema, or the accumulation of lymphatic fluid, proteins and cellular waste that results in severe swelling in the arms, legs or other areas of the body, can lead to disfigurement, loss of the use of limbs and severe infection.

n The largest group of people diagnosed with lymphedema are cancer patients, including 20 percent of all breast cancer patients.

n There is no cure, no drug and no effective surgical treatment for lymphedema.

n Lyphemeda research has been notably limited.

Hovatter said what the proclamations do not state is that:

n The compression bandages used to treat lymphedema patients are not covered by insurance.

n Those bandages come at a cost that is beyond most patients’ means.

n With timely treatment, patients can live relatively normal lives.

And so her work continues.

Joining with other families and lymphedema patients nationwide, Hovatter is currently lobbying Congress to improve insurance coverage for lymphedema treatment and the compression bandages that typically cost $800 each, must be replaced every six months, and in the worst of cases, must be custom-made to fit the patient’s disfigurement.

In September, she hopes to be among lymphedema advocates from across the country who will spend three days in Washington making their plea for enactment of the Lymphedema Treatment Act.

“The bill is in Congress now,” she said. “I have committed my own life to raising the public’s awareness of lymphedema and finding a cure for the disease. Too many people do not get diagnosed in time and end up with infection throughout their body, even death.

“I feel called by God to do all I can do to make sure they get the treatment they need. It is my mission to make everyone aware of this terrible disease.”

On March 13, Hovatter’s recently reorganized Tri-Cities Lymphedema Support Group will conduct a Caring and Sharing meet and greet at the Health Resources Center at The Mall at Johnson City.

More information about the local support group may be obtained by calling Hovatter 341-5737 or email hovatter@goldmail.etsu.edu. More information about the pending Lymphedema Treatment Act can be found online at www.LymphedemaTreatmentAct.org.

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