Finding joy after rare neurologic diagnosis

By Cynthia Weiss

When Joy Carol finds something she is passionate about, she embraces it. A love of international development work and education led to a 35-year career working with international organizations, including the United Nations Development Programme, the Ford Foundation, Save the Children and Child Fund.

Although New York City was her home base, Joy visited and supervised programs in more than 40 developing countries.

In 2013, just after her 75^th birthday, Joy was visiting friends in Greece when she first realized her health might be in jeopardy. 

“When my friends and I hiked down a cliff to a beautiful beach, I had trouble getting back up the hill. And although I’m a good swimmer, my legs felt heavy, and I had difficulty getting out of the sea," she says.

Things worsened after she returned home. "I started falling down — in the streets, in the subway, in my bathtub. I was black and blue all over my body,” Joy recalls.

Doctors ran multiple tests to no avail. Joy's health was failing rapidly. Her local physician sent blood and spinal fluid samples to academic medical centers in the hope of finding a diagnosis. Mayo Clinic, which has a dedicated neuropathology laboratory, found the answer.

Joy was suffering from paraneoplastic syndrome, a rare condition in which a person's antibodies attack the central nervous system in addition to cancer cells. Joy had undiagnosed breast cancer.

Despite surgery, radiation and chemotherapy, Joy's condition continued to deteriorate. She was, at one point, confined to a wheelchair and required around-the-clock assistance with everything from dressing and bathing to eating.

Time for a change

Knowing Mayo Clinic understood how this syndrome affected the body and possible ways to treat it, in December 2014, Joy opted to relocate to Florida. She moved to a retirement community about 40 miles west of Jacksonville and established care with Dr. Kurt Jaeckle, a neuro-oncologist at Mayo Clinic, who was familiar with paraneoplastic syndromes.

Under Dr. Jaeckle's guidance, Joy began a regimen of intravenous steroid treatments. 

The future was still uncertain, but Joy embraced her diagnosis and used it to propel herself forward. 

“Although the paraneoplastic syndrome has left me somewhat disabled and unable to continue doing some of the international work I enjoyed, I took some time to grieve my losses and to explore what skills and gifts I still had to share," says Joy.

As time progressed, Joy's condition improved, and she found her new passion — being a spokesperson for disabled people.

"I knew I could inspire people with my story," says Joy, who became a minister, published author and is a sought-after presenter.

"Today I am alive because of Mayo Clinic, and I am wholeheartedly embracing my new passion."

Watch and learn more about Joy's journey:

This story was originally published on the Sharing Mayo Clinic blog.