Lupus patient Joella Baker takes race for fitness to the marathon Monday, May 09, 2011
By Jack Kelly, Pittsburgh Post-Gazette
Rebecca Droke/Post-Gazette
Joella Baker, a triathlete for Team USA, at the North Boundary Park in Cranberry.
Joella Baker, 40, of Harmony, is a top-flight endurance athlete who has competed in dozens of marathons and triathlons, including, in 2009, the "Beach to Battleship" triathlon in North Carolina, which features Ironman distances (2.4-mile ocean swim; 112-mile bike ride, 26.2-mile run).
Her accomplishments are all the more remarkable because 10 years ago, it was difficult for her just to get out of bed.
"It was a few days before Christmas in 2000. I was training for the Las Vegas Marathon," she recalled. "I got a terrible rash around my hands and face. The next day I fell down getting out of bed. I couldn't stand up."
Her father took her to the emergency room of a local hospital. Doctors couldn't figure out what was wrong with her, so she was sent home. The next day she was back.
"I was still so fatigued I just couldn't walk," Ms. Baker said. "Nothing had improved. My hands felt so bad I actually wanted to cut my wedding ring off."
It took about six months before she was diagnosed with lupus, an inflammatory disease that occurs when the body's immune system attacks its own tissues and organs. Lupus affects most frequently the skin, blood, joints and kidneys.
Lupus is sometimes called "the Great Impersonator," because its symptoms mimic indications of other illnesses. About 1.5 million Americans, the vast majority of them women, suffer from lupus.
Doctors don't know for sure what causes lupus, though it seems to be hereditary, or why women are so much more susceptible to the disease. There is no cure for lupus, but "flares" can be controlled by anti-inflammatory drugs.
Lupus flares can be triggered by the ultraviolet rays in sunlight, and by stress, said Susan Manzi, director of the Lupus Center of Excellence at the West Penn Allegheny Health System.
One of the most effective anti-inflammatory drugs is prednisone, a synthetic corticosteriod. But prednisone has unpleasant side effects, particularly for an athlete like Joella Baker.
"Prednisone actually causes muscle weakness, weight gain, bone loss," Dr. Manzi said. "Prednisone is not Joella's friend. She almost has to work twice as hard to combat the effect of the medications that are used to treat her."
When she first started taking prednisone, she ballooned up to 175 pounds from her normal weight of 135 pounds, Ms. Baker said.
"I doubted I would ever be able to go back to the sport of running," she said.
Ms. Baker ran cross country and track at Quigley Catholic High School in Baden, but at the time she wasn't thrilled with the sport.
"Actually, in high school I hated running," she said.
But what had been a chore in high school became a passion at Duquesne University, where she was on the track, cross-country and swim teams. She was determined not to let her disease, or the side effects of the medicines she takes to control it, keep her from the sports she loves.
"I ran the Pittsburgh Marathon a year after diagnosis," she said.
Now she works out between two and five hours a day, six days a week.
"Her attitude is off the scale," Dr. Manzi said. "Her discipline is almost unmatched. She inspires me tremendously."
Ms. Baker said she started seeing Dr. Manzi about three years ago.
"A friend told me what an expert she is," Ms. Baker said. "I also wanted to get involved in some of the research she is doing."
Ms. Baker wanted to help her study the role exercise could play in controlling lupus, Dr. Manzi said. She's started Get Fit Families, a personal training program for people with diseases.
What Ms. Baker teaches in that program is important, Dr. Manzi said.
"There are a lot of benefits to exercise besides strengthening your muscles," she said. "Exercise has been shown to improve depression, and exercise can impact your immune system, improve your resistance to infections."
"The most important part about starting an exercise program after being diagnosed with lupus or after going through a major surgery, recovering from cancer or dealing with any other major change in your life is to know your body, know your limits, have fun and don't give up," Ms. Baker advises on her Web site, www.getfitfamilies.com. "If you start out slow and listen to your body, you can eventually reach your goals and start living your life."
The role model Ms. Baker provides is just as important as the sound advice she gives, Dr. Manzi said.
"[Lupus] is not recognized for how debilitating it can be and how relentless it can be," she said. "It takes not only good drug treatment. It takes an optimal psychological state and a resolve that you are going to beat it."