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Living with Lupus

A local woman has turned a personal torment into a mission

By Kelly Twedell

Stephanie Kennedy was a marketing professional and an aerobics teacher when she began experiencing symptoms that ranged from leg pain and lethargy to sores in her mouth. In an effort to find out what was wrong, she saw seven doctors in Fayetteville.

They ran multiple tests and but didn’t diagnose her with any ailment, some even said she was a hypochondriac.

A neurologist who tapped her knees with a rubber, triangle-shaped, mallet told her to drink more water. As an aerobic instructor who was then teaching classes four or five times a day, the physicians looked at Kennedy and saw the picture of good health.

She faced her husband in tears after the visit with the neurologist. She knew she was not crazy. He supported her and asked her to see one more doctor.

New to Fayetteville, she didn’t know who to see, but she looked up a doctor near the mall and went in for yet another consultation. She was up front with the doctor about all her past tests and the skepticism of the previous doctors. The new doctor did more than just the first time patient visit panel of tests and called her later that night with news — bad news.

He informed her that her rheumatoid panel had come back with her anti-nuclear antibodies spiking through the roof. He referred her to a rheumatologist in Pinehurst, as the only one in Fayetteville had a long waiting list. The rheumatologist did the blood work specific for lupus and it came back positive.

Kennedy had to laugh. Through her own research online after the seven doctors had doubted her symptoms, she had thought her symptoms closely matched those for lupus.

“I never vocalized it to the doctors, because I thought, ‘who am I to tell them what I think I have’,” Kennedy said.

The type of lupus Kennedy has is known as SLE, for Systemic Lupus Erythematosis, an internal variety that affects the organs, tissue, cartilage and joints. The other two types of lupus affect the skin or are drug-induced.

Through the line of medical questioning, Kennedy quickly realized that her family history played a part in her disease. Her mother had several other autoimmune diseases.

Immediately starting two types of medicine along with pain relievers, Kennedy felt better months down the road in 2001. And, until 2009 the medications seemed to keep the lupus symptoms at bay, but then the disease worsened.

Lupus is known as “the great imitator” disease, a disease whose symptoms are often diagnosed as other ailments. It affects nearly 1.5 million Americans, 90 percent of whom are female. It is a chronic inflammatory disease that can affect various parts of the body, especially the skin, joints, blood and kidneys.

It is also referred to as “the invisible disease” because when a sufferer is not experiencing the symptoms, they do not appear sick. Begging to differ, Kennedy pulled open a tote bag brimming over with brown prescription medicine bottles that she divides up by morning and nighttime meds.

After not being able to breathe following just five minutes of instructing aerobics, Kennedy knew it was time for another course of action. Those symptoms, combined with a new high-demand job involving trade shows and long hours, caused her to feel like her body was breaking down. Her white blood cell count and potassium were at an all-time low, putting her in the hospital for seven or eight days at a time.

Between 2009 and now, she acquired four other autoimmune diseases, including candida from her esophageal tract down to her stomach for six months, which is common for lupus patients. Her esophagus was so inflamed she could only eat baby food for nine months before having a port installed in her upper arm. Her body was unable to digest food, preventing her from absorbing the nutrients she needed to gain weight.

In 2010 Kennedy, who is 5 feet 9 inches tall, weighed 143 pounds. Nine months later she weighed just 85 pounds, with no explanation for why, even after numerous CT scans and tests, she had lost almost half her body weight. Later doctors would learn that Kennedy had a stomach full of blood and that she was not able to break down the food to absorb the calories and nutrients.

Side effects of Kennedy’s lupus include days when she is in so much pain she cannot get out of bed. Pausing to fight back her tears, she shared how much of her 5-year-old son’s activities she has missed, such as his baseball games, and how strong his bond is with his daddy as a result.

While she was very involved with her two now-teenaged daughters in the earlier days of her illness, her husband handles the day-to-day parenting for all of the children now. He gets them to school each morning, takes them to their weekly cheerleading and softball practices and travels for the tournaments, as well as running the household. But her kids don’t see it that way.

“I could never ask for a better understanding mother than her,” said her daughter, 13-year-old Shaina Kennedy, a 7th grade student at Mac Williams Middle School. “She has always been the person I looked up to and who I always wanted to be like. She never gave up on me, no matter how hopeless I seemed. She molded me in to the person I am and I’m proud to be. I’m a cheerleader, on SGA, and Beta Club. She encourages me to be the best I can be. She never lets lupus stop her. Not then. Not now. Not ever.”

About 5 percent of the children born to individuals with lupus will develop the illness. Kennedy keeps a detailed journal for each child documenting headaches or other symptoms she has in hopes of helping them with early detection should the disease plague any of her children one day.

Since 2010 her flare-ups occur once every two weeks and cause a painful red “butterfly rash” that spreads across her face like a mask. Jokingly calling herself the human barometer, Kennedy said she knows when the flare-ups are coming, just as some people can tell when the rain is coming. Her bones hurt and her joints begin to swell. The pain in her chest comes on strong and her heart rate increases, along with extreme fatigue.

Staying positive on her Facebook page and interspersing sarcasm and jokes into their family life as a coping mechanism, deep down inside Kennedy admits that she still has hope — hope that medical research will come forward to provide her with relief and decrease the symptoms that have robbed her of her once-normal life. The symbol for lupus is a purple butterfly. Kennedy has this butterfly tattooed on the inside of her ankle as a daily reminder to hold fast to that hope.

When she married at the age of 22 and anxiously began her climb up the corporate ladder in marketing she never anticipated the turn her life would take. Now 39 and no longer working because of the disease, she uses her marketing knowledge to raise community awareness about lupus.

“Steph and I have been together for over 19 years, we were college sweet hearts,” said her husband, Courtland Kennedy. “Lupus has taken a lot from us, but it’s also brought us closer together. We both know we’re there for each other no matter what life throws at us. She’s the strongest person I know.”

In 2009 Kennedy rallied her close friends and supporters to create a lupus Walk event in Fayetteville. While there are annual Lupus Walks in Raleigh in Charlotte, there was nothing in Fayetteville. Their first year, the ladies raised $23,000. The next year they raised $39,000. In their third year, 2012, Kennedy’s husband joined forces with them and they raised $46,000 with over 950 walkers participating.

The next Lupus Awareness Walk in Fayetteville will be in September at Festival Park and the donations will go directly to the Lupus Foundation of North Carolina, which brings educational classes here for younger teens dealing with the illness, as well as courses for caregivers and educational materials for the community.

“You don’t go through lupus alone, the whole family goes through it,” Stephanie Kennedy said.

It’s a sentiment echoed by her children. “Lupus takes a big part in all of our lives, but we all have learned how to push past that and still be a normal family,” said her 14-year-old daughter Kaylin, a freshman at Cape Fear High School. “We all have challenges in our lives, but the thing is that we know how to hide the fact that our mother is so sick, and try to make the best out of every moment.”

To learn more about lupus, go to www.lupus.org.