In spite of the effects of a debilitating disease, a Statesboro woman has made it her mission to advocate for better health service options for homebound patients.

Before being stricken with a disease that took away life as she knew it, Shannon Killebrew loved animals and dreamed of becoming a veterinarian. Then something happened, and today she is trapped in what she describes as a world of pain and limitations, struggling to not only maintain a life for herself but also to help others facing the same plight.

Killebrew suffers from reflex sympathetic dystrophy, a debilitating, progressive disease that causes extreme pain and disability. But that isn't her biggest problem; keeping home health care is her main challenge, she said.

Faced with continuous problems getting the help she needs, Killebrew has launched a campaign to promote better, more accessible health care services for the homebound. Her efforts have paid off through her story being told in a book supported by the International RSD Foundation. 

"The hope is to raise awareness for RSD sufferers while simultaneously creating a better understanding of the disease process and its effects on patients' lives," she said.

The beginning

Killebrew started feeling the effects of RSD in 2006. She was diagnosed a year later. 

"The diagnosis came after a year of change and worsening symptoms," she said, sharing her story with the Statesboro Herald by text because she is unable to speak loudly, and visits are stressful. She must type with one finger, so "it takes me a while," she said. Her disease makes it so she cannot handle loud noises, bright light, strong odors or even much motion. Travel is too painful to endure.

"It began as a feeling of tightness and pain, similar to the feeling of lack of circulation," she said. "Within weeks of onset it had progressed to considerable swelling and excruciating pain when weight bearing or walking."

Six weeks later, Killebrew was wheelchair bound. It took a year of surgeries, testing, blood work and imaging before the actual diagnosis came. 

"The pain was very severe, much like post-surgical pain that never ended, but intensified over time," she said. "RSD has been dubbed as 'the suicide disease' by modern medicine due to its level of pain intensity, rated as 46 on the McGill pain scale (1-50), above amputation and unprepared child birth. Harvard has (called the disease) 'hell on earth.'"

Killebrew can barely tolerate bed sheets touching her legs. 

"I haven't worn shoes since 2006. The slightest touch caused pain, and being isolated from human interaction was, in itself, debilitating."

After a visit to the Mayo Clinic, Killebrew learned RSD is rooted in the sympathetic nervous system. 

"This is where the flight or fight response is located. The RSD basically had my nervous system tuned to high sensitivity," she said. "Loud noises, bright lights, smells, stress, temperature changes all caused extreme pain."

The symptoms began spreading to her mouth, gums and jaws, causing issues with chewing and speaking. 

"I am now on a liquid diet and can only softly whisper. The sensitivity in my facial nerves prohibit me from wearing my glasses or contacts, and I am legally blind without them. My entire life as I knew it was over. The disease seemed to have taken all but my heartbeat."

At mercy of caregivers 

Divorced and living alone, Killebrew soon learned she needed help — lots of help.

"Due to my need for caregivers, I soon entered a new world," she said. "It was quite an adjustment to allow strangers in my home during my most personal activities and trust them with my home."

Home health care agencies don't focus on stability and continuity of care for the patient, she said. 

"As soon as I would exhaust myself training a new person, I would open my door to another stranger," she said. "This was exhausting in itself. I found myself trusting total strangers because I simply had no choice."

She said all patients dependent on others "have a fear there will be someone who will take advantage or be untrustworthy."

"This fear came to life for me in 2017, as every patient's worst nightmare occurred in my home," she said.

When one caregiver relocated, a new one came. This woman was locally employed and had been screened, "stated she was an LPN and seemed to be very knowledgeable," Killebrew said. "But early into the employment, there were numerous warning signs."

She began noticing odd behavior that was undeniable.

"I was sure she was actively stealing, so I texted a family member for help."

The relative confirmed that almost all of Killebrew's jewelry was missing, and they called 911.

"My sense of safety and well-being forever changed on that day," she said. "This person was actively using methamphetamine and was not sober at work. She had numerous items in her possession from other patients as well. She only took care of very fragile patients, most of whom were bed bound and nonverbal."

The caregiver stole her medications and savings as well, she said. 

"Not only had she stolen property during her entire employment, she left me with no method of symptom control, knowing my condition," she said. "This one event led to severe anxiety. … I would never fully recover from the trauma. I cannot express the level of fear and sleepless nights that would follow. No one should ever be a victim, but it's even more abhorrent when the trauma comes from the very person who is to provide care and security."

Fighting for answers

Still, Killebrew said she never thought about giving up just because of her disease and bad experience. Not only did she need access to better care options, she knew others faced the same plight.

"My health declined drastically after the traumatic incident with the caregiver," she said. "I found myself too fragile to travel. Traveling had always been a huge obstacle, but now it was impossible. The vibration of a vehicle alone caused severe pain, and paramedics agreed it was unsafe."

She could not get a doctor to make house calls, either. 

"I pleaded with many local physicians for months for telemedicine and was denied. My physician referred me to hospice in an attempt to have the care I needed, but this was denied by insurance," she said.

"I was too ill to travel and was not allowed hospice care. Desperation set in. It was now abundantly clear that in order to have the medical care I needed, not only for my health but for my disability requirements, I would need a house call."

She spent two years sending thousands of emails, phone calls and correspondence, locating several house-call physicians but none willing to travel to Statesboro. 

"At one point, I was referred for palliative care in my home, only to learn there is no palliative care agency in Statesboro, and the closest, in Savannah, does not participate with my insurance," she said.

The frustration she felt led her to spend her time striving for an answer. Killebrew launched a Facebook page, ''Shannon's Hope for House Calls and Home Medical Care," a campaign for change and innovations in the health care field. She is an advocate for home services and uses her Facebook page to promote awareness of the needs.

"Physician in-home care allows the patient to remain comfortable while the physician can better access the patient and their environment for a better understanding of the personal needs of the patient," she said. 

In-home care can help with germ control and exposure of fragile patients, and "the physician/patient relationship is stronger," she said.

Killebrew hopes people will pay attention to her cause.  

"I am endeavoring to use my years of struggles and pain for a positive impact on our community," she said. "I began my advocacy envisioning a new way of care. My chronic search for answers and care led me to the realization that I had to become my own advocate."

And one for others, as well. 

"Despite my numerous limitations, I have forged a resiliency and tenacity for survival. I have gained an appreciation of a sense of humor, small kindnesses, and a sense of purpose to help as many people through this struggle as possible," she said.

Getting attention

Killebrew is thrilled to be featured in a book sponsored by the International RSD Foundation, co-authored by Alaa Abd-Elsayed, MD, MPH, FASA, and Eric Phillips, president of the International RSD Foundation. The book, "Patients' Perspective of Living in Chronic Pain, Volume I," is available on Amazon.

RSD has, in some areas of medicine, been renamed chronic regional pain syndrome, or CRPS, she said.

Killebrew was born at Bulloch Memorial Hospital and graduated from Bulloch Academy. She pursued a biology/pre-veterinary degree from Georgia Southern University, but "my health limitations led to a change of major, and I pursued my second interest of accounting." 

She holds a BBA in accounting from Georgia Southern. 

"My last semester was spent doing coursework from a hospital room and my bed. I was quite determined to graduate," she said. 

Before her health decline, she worked at a veterinary clinic and served as director of a local animal shelter. 

"I hope to initiate a new level of in-home medical care for all in need in Statesboro. Keeping the most vulnerable in their home for longevity and quality of care is at the forefront," she said.  

Herald reporter Holli Deal Saxon may be reached at (912) 489-9414.