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Mom with lupus hopes to educate others about disease
Illness difficult to diagnose
By: Natalie Shelton
Before she was diagnosed with lupus, Patty Ingram thought her achy joints could be attributed to “Bob Greene's Total Body Makeover.”
A little more than a year ago, she was three or four weeks into the 12-week workout program when her friends started good-naturedly telling her that fitness trainer Greene was responsible for her problems.
But when she started thinking about other symptoms she'd had of late — chest pain, fatigue, sudden skin rashes and swollen joints — she started thinking maybe Greene wasn't the culprit.
“I would wake up and my fingers would be all swollen,” said Ingram, who lives in Kansas City North and is a substitute teacher in the Liberty school district. “I joked to my husband that he'd better never ask me to sign something in the morning.”
Her sister, an emergency room doctor at Research Medical Center, saw the problems Ingram was experiencing one morning and told Ingram she was taking her to Research for blood work. Ingram's sister thought it might be Lyme disease.
Initial lab results came back fine, but then the sisters saw an alarming red flag: One test for autoimmune diseases called an ANA titer came back “all out of whack,” Ingram said.
It wasn't a definitive test for lupus, and when she then saw a rheumatologist, she heard from him, “You are golden. I don't think there's anything to worry about.”
Two weeks later, when lab results came back in March 2006, he had to eat his words.
In the year that followed, Ingram, the mother of two young daughters, has learned to come to terms with the disease and is doing all she can to raise awareness of lupus, properly known as systemic lupus erythematosus, or SLE.
“The antibodies inside of me are attacking the good things rather than the bad things,” Ingram said. “I can handle the joint pain, but for some people it attacks their organs.”
Ingram's lupus isn't rearing its ugly head now that she takes the prescription drug Plaquenil, originally developed as an anti-malaria drug, she said. It tricks her body into thinking it has malaria so the antibodies attack what they think is malaria rather than attacking good cells.
Lupus is adept at mimicking other diseases and is difficult to diagnose, according to “The First Year — Lupus: An Essential Guide for the Newly Diagnosed,” a book Ingram has no doubt read from cover to cover.
“Lupus can, at times, appear to be anything from chronic migraines to simple gastrointestinal disorders (such as irritable bowel syndrome) to chronic fatigue syndrome to fibromyalgia to dermatitis — anything that can be a symptom or a distinct syndrome can be determined as its own disease, and often is,” author Nancy C. Hanger said in the book.
October is Lupus Awareness Month, and Ingram hopes those with mysterious symptoms similar to hers might find a name for their illness and know that the disease is manageable.
“Everyone seems to know someone who has it,” Ingram said. “But no one seems to know what it is.”
She recently became active with the Lupus Foundation of American, Kansas City Chapter and was its top fundraiser ($2,100) in this year's Walk for Lupus Now, which is held every September by the foundation. Her team of friends and family was the top team in fundraising, said Arletha Manlove, the foundation's president and chief executive officer.
“The basic thing is, I've got it, but I'm carrying on with my life,” Ingram said, “and if a flare-up happens, I deal with it.”
A Lupus Support Group meets on the first Wednesday of each month at North Kansas City Hospital. The next meeting is Wednesday, Nov. 7. Meetings are led by a representative from Lupus Foundation of America, Kansas City Chapter. On odd months, meetings are from 11 a.m. to 12:30 p.m.; on even months, meetings are from 6 to 7:30 p.m.
Registration is requested for the free group. For more information, call 761-0850.
Staff writer Natalie Shelton can be reached at 781-4941 or nshelton@npgco.com.
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A little more than a year ago, she was three or four weeks into the 12-week workout program when her friends started good-naturedly telling her that fitness trainer Greene was responsible for her problems.
But when she started thinking about other symptoms she'd had of late — chest pain, fatigue, sudden skin rashes and swollen joints — she started thinking maybe Greene wasn't the culprit.
“I would wake up and my fingers would be all swollen,” said Ingram, who lives in Kansas City North and is a substitute teacher in the Liberty school district. “I joked to my husband that he'd better never ask me to sign something in the morning.”
Her sister, an emergency room doctor at Research Medical Center, saw the problems Ingram was experiencing one morning and told Ingram she was taking her to Research for blood work. Ingram's sister thought it might be Lyme disease.
Initial lab results came back fine, but then the sisters saw an alarming red flag: One test for autoimmune diseases called an ANA titer came back “all out of whack,” Ingram said.
It wasn't a definitive test for lupus, and when she then saw a rheumatologist, she heard from him, “You are golden. I don't think there's anything to worry about.”
Two weeks later, when lab results came back in March 2006, he had to eat his words.
In the year that followed, Ingram, the mother of two young daughters, has learned to come to terms with the disease and is doing all she can to raise awareness of lupus, properly known as systemic lupus erythematosus, or SLE.
“The antibodies inside of me are attacking the good things rather than the bad things,” Ingram said. “I can handle the joint pain, but for some people it attacks their organs.”
Ingram's lupus isn't rearing its ugly head now that she takes the prescription drug Plaquenil, originally developed as an anti-malaria drug, she said. It tricks her body into thinking it has malaria so the antibodies attack what they think is malaria rather than attacking good cells.
Lupus is adept at mimicking other diseases and is difficult to diagnose, according to “The First Year — Lupus: An Essential Guide for the Newly Diagnosed,” a book Ingram has no doubt read from cover to cover.
“Lupus can, at times, appear to be anything from chronic migraines to simple gastrointestinal disorders (such as irritable bowel syndrome) to chronic fatigue syndrome to fibromyalgia to dermatitis — anything that can be a symptom or a distinct syndrome can be determined as its own disease, and often is,” author Nancy C. Hanger said in the book.
October is Lupus Awareness Month, and Ingram hopes those with mysterious symptoms similar to hers might find a name for their illness and know that the disease is manageable.
“Everyone seems to know someone who has it,” Ingram said. “But no one seems to know what it is.”
She recently became active with the Lupus Foundation of American, Kansas City Chapter and was its top fundraiser ($2,100) in this year's Walk for Lupus Now, which is held every September by the foundation. Her team of friends and family was the top team in fundraising, said Arletha Manlove, the foundation's president and chief executive officer.
“The basic thing is, I've got it, but I'm carrying on with my life,” Ingram said, “and if a flare-up happens, I deal with it.”
A Lupus Support Group meets on the first Wednesday of each month at North Kansas City Hospital. The next meeting is Wednesday, Nov. 7. Meetings are led by a representative from Lupus Foundation of America, Kansas City Chapter. On odd months, meetings are from 11 a.m. to 12:30 p.m.; on even months, meetings are from 6 to 7:30 p.m.
Registration is requested for the free group. For more information, call 761-0850.
Staff writer Natalie Shelton can be reached at 781-4941 or nshelton@npgco.com.