Sometimes, the pain is manageable. Vita Johnson can operate her mechanical wheelchair, but her back and right arm are almost always in pain, like the muscles are constantly tense. Other times, the pain is unbearable. All she can do is stay in her darkened bedroom and cry.
She used to jog, lift weights, swim and jump out of airplanes for fun. But multiple sclerosis has reduced her body to the point where she needs help just to go to the bathroom.
She wants to be better, but none of her treatments have stopped the MS, a disease that attacks the central nervous system. She sees hope, but it's halfway around the world.
Johnson is raising money to go to China to receive injections of stem cells, a treatment that she hopes will improve her condition. She'd like to do it in her own country, but it's not permitted in the United States.
Stem cell therapy has been hotly debated. Clinics in Costa Rica, China and elsewhere offer the treatments for a variety of afflictions, from cerebral palsy to spinal cord injuries. Some of these clinics' Web sites feature stories of the wheelchair-bound who take their first steps again, the blind who can make out shapes and letters.
IS THERE HOPE?
But in the United States, skepticism mixes with hope. Advocates of stem cell research say one day stem cell treatments may prove beneficial for Vita and other MS suffers. But the evidence isn't there yet. The National Multiple Sclerosis Society issued a statement last month encouraging research of stem cells in clinical tests.
But the society warns that overseas clinics claim success but don't back it up with scientific or medical evidence.
"We believe that research in all types of stem cells holds great promise," the statement says. "There are many safety and efficacy issues that researchers are working to resolve through carefully controlled research. It has not yet been adequately determined, through rigorous clinical testing, that stem cell therapy is safe and beneficial to people with multiple sclerosis."
Dr. Nada Abou-Fayssal, a neurologist from the Medical University of South Carolina, said more patients recently have been inquiring about stem cells and their benefits. But she advises against a trip overseas.
"I know there are anecdotal reports, but I can't recommend it because it's not proven to work," she said. "There have not been valid studies to support the benefits. I try to support my patients based on what's shown to be effective."
Vita and her husband, Kyle, have read the warnings. They're aware of the misgivings, but they're willing to take the risk.
LIVING WITH MS
Vita was diagnosed with multiple sclerosis in March 2002. The warning signs came suddenly. She had been running on a treadmill when her foot gave out and just started dragging when she lifted it. A while later, she was walking in heels when it happened again. The final sign came in a Target parking lot. Her bowels gave out.
She was bounced around to doctors until she finally got the diagnosis.
For the first year or so, she was able to live a relatively normal life. She gave birth to a daughter in March 2003.
Between June and November of that year, her condition worsened. The MS forced her from being able to walk with some assistance to basically living her waking hours in a wheelchair.
She's seen six neurologists. She's taken a slew of costly prescribed drugs, including Avonex, which caused a fever so bad she submerged herself in a cold bath. She's tried holistic approaches, ointment rubs and histamine treatments. She's even tried a contraption of magnets and electric paddles called the Zapper. Her condition just worsened.
Vita's pain is constant. It got to the point where she had to cut her waist-length hair because she could no longer clean it herself. She's up two or three times a night to empty her bladder. Kyle has to help most of the time.
Kyle and Vita spend their days at their Hilton Head Island apartment with their rescued greyhound, Maggie, while their daughter is at school. Kyle is Vita's caretaker. Making matters worse, he's in the mortgage business, so money has been harder to come by.
Kyle woke up one night at 2:30 a.m. to guide Vita to the bathroom. Before heading back to bed he began searching the Internet and found Beike Biotechnology, a Chinese company that's treated more than 2,000 patients using injections of stem cells. Beike officials have been quoted in news stories claiming that it's only a matter of time before Western doctors confirm what they already know.
Over days and weeks, they found YouTube videos of news stories -- images of MS sufferers who return from overseas greatly improved. They called a women in Louisiana who had gone for stem cell treatments. She told them, "Go as soon as possible."
They settled on Beike. The seven injections of umbilical stem cells -- not the embryonic cells that have caused controversy stateside -- will cost $34,000. They'll have to stay for another 20 days for rehab and monitoring. The total bill is $50,000 for Kyle, Vita and their daughter to go.
Vita's brother in Atlanta is helping with fundraising. He's also thrown some work Kyle's way. He donated frequent flier miles, enough for one ticket. If all goes according to plan, she hopes to make the trip this summer.
She tempers her expectations. She knows miracles don't happen, that she won't be able to run five miles like she used to. But she can't help but fantasize about swimming in her apartment community's pool.
"If I could just get rid of the pain, that'd be amazing," she says, her voice raspy.
She remains upbeat when visitors stop by the house, talking and laughing with them. Kyle and Vita stay optimistic, not letting the MS beat them into a depression.
They start the day by bumping knuckles. They say, "Today's the day." The day they find hope, a new option, another life.
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