Mystery disease: Little known about cause, cures for lupus


First Posted: 1/15/2009

LUMBERTON - Helen Lamb peers out the window above her sink at her flourishing backyard garden. Potted plants hang from awnings and a large banana tree sprouts from the ground.
There was a time when Lamb would have been outside, pulling weeds, patting down potting soil or carefully pruning plants.
Today, a glimpse through the kitchen window is as close as she gets.
In 1993, Lamb was diagnosed with lupus, an incurable, autoimmune disorder that causes joint pain and extreme fatigue. The disease robbed her of energy, and she was forced to abandon her successful office cleaning business and go on disability.
“If I was the crying type I would have cried,” Helen said about hearing the diagnosis. “I was in shock and disbelief. It’s hard to imagine you had something and you didn’t know it.”
Lamb, 65, is among 1 million Americans living with lupus. More than 16,000 new cases are diagnosed each year, according to the Lupus Foundation of America.
Not much is known about the disease, but health officials hope to change that each October, which is Lupus Awareness Month.
“It’s one of those diseases that doesn’t have a good press agent,” said Dr. James “Brownie” McLeod of the Arthur J. Robinson Medical Clinic. “If you don’t have a friend or family member … rarely do you see or hear much about it.”
Lupus is a chronic inflammatory disease that affects various body parts, particularly the skin, joints, blood and kidneys. The immune system of a lupus sufferer can’t differentiate between foreign substances and its own cells and tissues. The immune system therefore makes antibodies against itself.
“It’s an army with no leader,” Lamb said. “It can do anything it wants to. It just picks a spot and goes.”
The body of research on lupus is slim. There is no lupus gene, and only about 10 percent of lupus sufferers have similarly afflicted family members.
McLeod sees lupus cases that range from mild to debilitating. Symptoms include achy joints, fevers of more than 100 degrees, arthritis and prolonged and extreme fatigue.
There are no definite causes of lupus, McLeod said, but certain patients appear to have dietary triggers. Blacks and American Indians are the most at-risk.
McLeod said that lupus is a difficult disease to live with because it’s chronic, but doesn’t always manifest itself.
“It waxes and wanes and people are not as sensitive to diseases that come and go,” McLeod said.
At one point, Lamb was sleeping 22 hours a day.
“It makes you exhausted, totally, totally exhausted,” she said. “It was my roughest time.”
Lamb’s condition has steadied since her initial diagnosis, but she’s had to modify her lifestyle considerably. She avoids the sun and stress, and she cannot drive or go shopping. Most days she can do little more than vacuum a few rooms in her house.
“I’m very, very limited,” she said. “You just get so tired. You have to lead a kind of relaxed lifestyle.”
Planning trips to someplace as simple as a neighborhood yard sale is difficult because she can’t predict if she’ll be able to go.
“Today I just sat on the couch,” she said. “Sometimes it takes me two weeks to get caught up on the ironing.”
Lamb takes about six pills in the morning and various pain pills throughout the day.
“Sometimes getting the medication right takes a while,” she said. “If the pain is too bad, I have to go into the (doctor’s) office for injections.”
Lamb said the lack of information surrounding the disease makes it difficult for sufferers.
“In the beginning, people complain they’re tired and people say they’re lazy,” she said. “I was lucky, my doctor believed me.”
Lamb said it is important that family and friends understand a person's limitations. Her husband, James Hubert, helps with the gardening and vacuuming. Her five children, Clayton, Glenn, Judy, Paul and Charlene, researched the disease and participate in charity walks that raise money and awareness.
“My family was in a state of shock when they found out,” she said. “Then they all pitched in and compared notes. They were very supportive, and we’ve learned a lot.”
James Hubert said he didn’t know much about the disease before he met Helen, but he is glad to help her however he can.
“It only bothers me because it bothers her,” he said. “I help her out with anything she needs.”
That includes the medical bills, which tend to get pricey because there is a lot of trial and error, he said.
“They give you something, and they don’t even know if it works,” he said.
Lamb said that dealing with the mental side of lupus is almost as hard as the physical suffering. Lupus sufferers have to come to terms with the fact that they can’t do all the things they used to do.
“It’s hard to admit I have this,” she said. “If I could get up every time the preacher said to, I would love it.
“I would love to take care of my garden,” she said. “Now I have a girl that does it.”
Lamb is determined not to let lupus run her life. She enjoys crocheting, needlepoint and reading.
Most of all, she wants to spread awareness about lupus, and said she is always willing to speak to someone about her condition.
“There’s got to be something I can do other than hang out and be sick,” she said.

comments powered by Disqus