Sponsor banner

Everyday Heroes: Joan White

Joan White was the third person in her family to be diagnosed with lymphedema -- painful and generally lifelong swelling, mainly in the arms or legs.

Her parents each developed it after battling cancer. Joan was hit with it after surgery for a ruptured appendix.

Yet, in the late 1980s, Joan had a hard time finding doctors who were knowledgeable about the condition, let alone treating it.

Learn to live with it, some healthcare professionals advised.

“That made me furious,” the Michigan native and longtime Georgian said.

Credit: Courtesy of Douglas White

Credit: Courtesy of Douglas White

She also was told her best bet was to seek treatment in Germany. She flew there, only to find that clinics saw patients with lymphedema in Princeton, N.J., and New York.

Joan was determined to find ways to help some of the millions of other people living with lymphedema. And nearly 30 years ago, she created the nonprofit, all-volunteer Lymphedema Lighthouse Network to raise awareness about the condition and support people coping with it.

Lymphedema is a chronic medical condition that develops from a blockage in the lymphatic system, preventing fluids from draining well and causing painful swelling.

Any problem that blocks the drainage of lymph fluid can cause lymphedema in the arms or legs and the chest wall, abdomen, neck, and genitals. This can include cancer, radiation treatments for cancer, surgery, and parasites in developing countries in the tropics.

At age 80, Joan still operates the nonprofit from her home in Roswell. She answers the frantic telephone calls that come in from lymphedema patients and caregivers.

And she’s ready to help. Her group keeps an extensive and constantly updated list of doctors and therapists who treat lymphedema, which is hugely helpful, especially to the newly diagnosed.

Beginning in 2004, the nonprofit also created a fund to provide bandages and garments for underserved patients who cannot afford them.

Arguably, the group’s most transformational move has been to bring together medical professionals engaged in treating lymphedema and the patients living through the pain and hardship it can create.

LLN just put on its 24th State of Georgia Lymphedema Education Awareness Conference in late October. Some topics included the latest research and innovation, as well as the unique aspects of the condition in children.

The conferences bring hope and encouragement to patients, Joan said. “The common goal is to provide patients with lymphedema the opportunity to live their best lives for their entire lives.”

Controlling the swelling and pain requires a time-consuming daily regime of wrapping the entire limb with low-stretch bandages to push the lymph fluid along. Similarly, close-fitting elastic sleeves or stockings are worn to compress the arm or leg to encourage lymph fluid drainage. Patients often require the help of specially trained physical therapists.

Joan said her faith has guided her along the way. When she was still reeling from the lack of information about lymphedema, she said God told her he had a plan for her to start the network.

Even the name picked for the nonprofit seemed appropriate since the purpose of a lighthouse is to show the way, she said.

HOW TO HELP

Contact Joan and the Lighthouse Lymphedema Network at Home (lighthouselymphedema.org) or Lighthouse Lymphedema Network | Facebook.

Hear what the CDC says about the disease and why famous actress Kathy Bates is speaking about it. Lymphedema | Side Effects of Cancer Treatment | CDC


WE’RE STRONGER TOGETHER: A SPECIAL PROJECT

This place we call home is filled with ordinary people who accomplish extraordinary feats. Their selfless acts make this region so special – and they bring out the best in all of us. With the holidays upon us, we wanted to share their inspiring stories, celebrate their accomplishments, and offer ways that you can help.

Just as the 55 people we’re profiling can’t do it alone, nor can we. That’s why we worked closely with our partners to bring you this collection of uplifting stories.

We hope they leave you feeling inspired and ready to tackle the busy new year that lies ahead. We hope they make you feel more connected to your community or to your neighbors.

And maybe, just maybe, they will motivate you to come up with your own small way to make a big difference in the lives of others.

About the Author