Ramona Runyon -- "Wearing purple to raise public awareness" <

Living with lupus: No cure, cause unknown

August 21, 2012

Ramona Runyon is a victim, and she shared with Putnam Rotarians today her personal story of faith and inner strength in the face of hopeless debilitation.

"It all started out the summer that I turned thirty years of age," she said. "Instead of getting a tan I had a rash on my face and extremities. Then fatigue, nausea and a headache set in."

The young mother of two children was referred to a hematologist who diagnosed an auto immune disease called lupus.

The disorder varies from mild to life-threatening, Runyon told her audience.

"There are five types," she said. I have the most common type,which is called systemic lupus erythematosus. It can affect any part of the body."

No two people have the same symptoms, she said, but fatigue is common to nearly every victim. "The fatigue is not that you are tired, and feel refreshed when you rest, but exhaustion. I've been so fatigued that it was an effort to breathe," she said.

"My husband had to turn me over in bed and carry me to the bathroom and help me with personal hygiene care."

Another common symptom of lupus is arthritis -- swelling, inflammation and pain of the joints. "My doctors tell me that I am a better forecaster than the meteorologists because my lupus flares whenever rain or snow is coming.

"When I get a virus, my immune system goes into super drive. Most people let the virus run its course. I have to go to the hospital.

"Lupus has no cure, because they do not know what causes it," she said. "There is no 'lupus gene.'

"My social life is not the active calendar that I used to have when I was always on the go doing something. It mostly consists of phone visits, prayer lunches with friends on my better days, and visits from my immediate family

"I go to church when I can. But being susceptible to germs and infections. I avoid sick individuals and crowds.

"Having support and help from family and friends is beneficial. Prayer support from others, and my faith and reliance in Jesus Christ have a direct impact on my dealing with my disease.

"For all people who have lupus, I want a cure. Until then I want better and more affordable treatments with fewer side effects. And I want more research."

Surprisingly, there is no state organization dedicated to research and support of lupus victims. However, the Lupus Foundation of America reports that research is nearing significant breakthroughs in the underlying science of the immune system.

Public awareness and understanding continue to grow. Improvements in diagnosis, a greater understanding of how medications can work together to control symptoms, and increased knowledge of the effects of the disease have allowed better management of lupus over time. Today people with lupus are leading healthier lives and living longer than at any time in history.

And while Ramona Runyon waits and labors in her quiet way to raise lupus awareness in the community, she witnesses to the strength and will of the human spirit.

She was seated as she spoke, but Rotarians received her story with a standing ovation.