Area women work to raise lymphedema awareness with podcast

It took Cynthia “Ms. Cjay” Judge 11 years after her first mastectomy to notice the swelling in her right hand. The two-time breast cancer survivor didn’t know what caused it. Her surgeon put her on a course of antibiotics, and though the swelling became progressively worse, doctor visits often ended with more prescriptions for pills.

Then, on Oct. 23, 2009, Judge woke up unable to get out of bed. Her heart was pounding rapidly, and she felt pain in her hand and arm. She said her arm grew almost six inches in size. A month later, she met Dr. Richard Hodnett, who diagnosed her with lymphedema.

“From the photos taken of me in the early ’80s, I can see that I had lymphedema but was not aware of it,” Judge said. “With lymphedema, it’s either under-diagnosed, misdiagnosed or not diagnosed at all. Medical schools spend maybe a day in class on the lymphatic system, but right now, there are 10 million people in the U.S. living with lymphedema.”

Lymphedema is a chronic but treatable disease that results in an accumulation of lymph fluid that causes swelling in parts of the body where lymph nodes or lymphatic vessels are damaged or inadequate.

It is usually followed by damage from cancer treatment, but there are also people who are born with lymphedema.

In order to raise awareness of the disease, Judge and breast cancer survivor Christine “Coach Christine” Wunderlin started “The Lymphedema Mavens” radio podcast in 2011, which airs internationally on TheCityFM.com.

The show’s producer, Millian Quinteros, estimates that the podcast has 2,000 to 3,000 regular listeners from around the world, including Germany, Africa and South Korea.

“The only thing that I remember is signing a release form that if I got lymphedema, I wouldn’t sue the surgeon,” Wunderlin said. “I didn’t make anything of it, but when my arm swelled up (to the point) where I couldn’t put my sleeve on, I realized something was wrong. My arm grew 2 inches.”

Wunderlin, who was diagnosed with lymphedema in July 2011, discovered there was something wrong with her arm shortly after flying to Louisiana.

Since cabin pressure that is experienced during air travel is less than the atmospheric pressure on the ground, the decreased pressure within the plane’s cabin may give rise to increased swelling in a lymphedematous limb as tissue pressures are physiologically altered, according to the National Lymphedema Network’s website, lymphnet.org.

“I was more upset about the lymphedema than I was about the breast cancer,” Wunderlin said. “What they don’t tell you is that if you take more than four lymph nodes out, then the probability of getting lymphedema is, like, 80 percent.”

Symptoms of lymphedema include swelling, being susceptible to infections, rashes and other skin texture changes, according to cancer.org.

Those who suffer from lymphedema must wear compression guards to maintain the swelling and use moisturizer.

Many patients, including Judge and Wunderlin, must undergo a manual lymphatic drainage, a massage that moves the fluid from the affected area to healthier parts of the lymphatic system, where the fluid then can be expelled from the body.

Sally Spurgeon, a licensed massage therapist and owner of Therapie, has been treating Wunderlin for almost a year.

She offers two types of techniques: cupping therapy and the manual lymphatic drainage massage technique to move the fluid from the affected area to healthier parts of the lymphatic system. That way, the fluid can be expelled from the body.

“About 60 percent of our clients come in for post-mastectomy massage,” Spurgeon said. “Some women develop lymphema, and some don’t. Everybody is different. Those who do experience it deal with fluid buildup, which can be painful and disabling.”

Recently, lymphedema has received attention from well-known names such as “American Horror Story” actress Kathy Bates and Wesley Warren Jr., the Las Vegas man whose scrotum grew to 132 pounds.

Warren was featured on the podcast shortly before he died in 2014.

Las Vegas proclaimed October to be Lymphedema Awareness Month thanks to the efforts of Judge and Wunderlin. Recently, North Las Vegas deemed March as Lymphedema Awareness Month.

Because Medicare does not cover compression garments and other lymphedema treatment compression supplies, Wunderlin and Judge are pushing for the Lymphedema Treatment Act.

The federal bill would enable coverage for compression, support patients’ adherence to their maintenance phase of treatment by covering their doctor-prescribed supplies and reduce the total health care cost associated with lymphedema by decreasing the incident of complications, and the presence of other disorders and disabilities resulting from the disease, according to lymphedematreatmentact.org.

There is no cure, and if ignored, lymphedema can cause deformities as well as skin or other infections.

“There’s a stigma about having lymphedema,” Judge said. “It’s not really talked about. That’s why we’re trying to bring attention to it.”

To reach North View reporter Sandy Lopez, email slopez@viewnews.com or call 702-383-4686. Find her on Twitter: @JournalismSandy.