80-year-old advocates for lymphedema patients

Joan White developed the chronic and painful condition lymphedema after she had surgery in the 1980s. That sparked her to create Lighthouse Lymphedema Network, to shine the light on the condition and help those who have it. Here she is vacationing at ached a picture taken today of me here at Lake Cadillac in her home state of Michigan. Courtesy of Douglas White

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Joan White developed the chronic and painful condition lymphedema after she had surgery in the 1980s. That sparked her to create Lighthouse Lymphedema Network, to shine the light on the condition and help those who have it. Here she is vacationing at ached a picture taken today of me here at Lake Cadillac in her home state of Michigan. Courtesy of Douglas White

Joan White has devoted nearly 30 years to helping others understand and deal with lymphedema, a painful condition that almost always persists for life.

White’s youngest son was still in high school when she was rushed to the hospital for what doctors later determined was a ruptured appendix and gangrene in the colon.

She rebounded from the surgery that kept her alive but not from the lymphedema it created.

Lymphedema is a chronic medical condition that develops from a blockage in the lymphatic system, preventing lymph fluids from draining well and resulting in painful swelling – often in the arms after breast cancer surgery.

In White’s case, she woke from her operation and almost immediately began experiencing swelling in her leg, ankle, and foot. As she searched for answers, she realized few doctors in the U.S. even understood what lymphedema was, let alone how to treat it.

That led her to create the Lighthouse Lymphedema Network, a highly respected nonprofit that White started in 1993 and still runs at age 80 from her home in Roswell.

“The Lord just put his hands on me and said: ‘I have a plan for you,” she said.

Her nonprofit helps patients to understand their diagnoses and find proper treatments.

“Many lymphedema patients are scared, don’t know any other person with lymphedema, and really need to talk to someone,” said Deb Cozzone, a member of LLN’s board of directors since its inception. “Joan spends hours on the phone with people who call because they found her number on the website or a brochure.”

The nonprofit does not have a paid staff and spends any donations and grants it receives solely on its mission.

“We don’t even buy coffee for our board,” White said.

All 20-plus members of her all-volunteer board have connections to lymphedema – either personal or professional – “and work their tails off,” she said.

Their commitment is so strong that “unless they die or move away, they stay on the board,” she said.

But the organization’s mission to educate extends far beyond patients and their loved ones – to the general public and medical community.

And that’s greatly needed, said Dr. Wei Chen, a surgeon at the Cleveland Clinic and one of a handful of doctors in the world who performs what are called super microsurgeries on lymphedema patients.

“What Joan is doing with the Lighthouse Lymphedema Network is incredibly important,” Chen said in a telephone interview. “Lymphedema patients as a group can be considered one of the most neglected patient populations of modern medicine.”

He said most doctors are undereducated about lymphedema, a relatively young medical specialty with few experts.

“If you ask 10 doctors what lymphedema is, 9.9 will get it wrong,” Chen said.

White’s nonprofit has organized 24 annual State of Georgia Lymphedema Education Awareness Conferences with local, national, and international speakers, including Chen.

The conferences include news of the latest treatments and personal stories from lymphedema patients. Medical professionals in attendance receive continuing education credits, and patients and their families meet the speakers, see the latest products for lymphedema treatment and management, and “learn that there is hope,” said Elaine Gunter, a biorepository consultant, retired lab chief for the Centers for Disease Control, and LLN board member.

She joined the nonprofit’s board in 2005 after being told the swelling in her leg was lymphedema. When she learned it was actually edema, “I was already hooked on LLN’s mission,” Gunter said.

LLN has developed a database of several hundred medical professionals and 1,400 patients, family members, and friends. It keeps a constantly updated list of doctors and therapists who treat lymphedema and is responsible for convincing Georgia leaders as early as 1998 to declare an annual Lymphedema Awareness Day.

Beginning in 2004, the board created a fund to provide bandages and garments for underserved patients who could not afford them, said Shelley Smith DiCecco, a member of LLN’s board, a certified lymphedema therapist, and owner of the lymphedema education company, LymphEd, LLC.

“What we have been able to accomplish is often greater and more significant than the larger [medical support] groups,” she said. “It is almost like a David and Goliath.”

She said White has made “true monumental contributions to the world of lymphedema, especially here in Georgia.

“Joan’s compassion and perseverance created a movement 30 years ago, and it just keeps growing.”


Treatment

Lymphedema most often affects the arms and legs, but it also can occur in the chest wall, abdomen, neck, and genitals. Some courses of treatment:

  • Manual lymphatic drainage is a massage technique that directs the lymphatic fluid away from the swollen area and into areas that are draining well. Only a certified lymphedema therapist can only perform it.
  • Mechanical lymphatic drainage involves a pump by a certified lymphedema therapist to draw fluid away from the area of swelling.
  • Highly specialized surgery can reduce the areas of swelling. Chen said about 14% to 16% of patients who receive this surgery could be described as cured.
  • The gold standard for non-surgical treatment is complete decongestive therapy (CDT) by a certified lymphedema therapist. Components of CDT are manual lymphatic drainage, gradient compress in the form of bandages or garments, skin care, exercise, nutrition and education.

For more info, go to lighthouselymphedema.org.