Chronic global disease remains unfamiliar to most Americans

[Adminஐﻬ]

Chronic global disease remains unfamiliar to most Americans

Posted: 11/30/06
What disease is more common than breast cancer and leukemia and affects more than five million people worldwide but only two out of every three Americans have heard of it?

"I was diagnosed [with lupus] at the end of 1999. When I was diagnosed, they didn't know what was going on because I had extreme fatigue. I was sleeping like 16 hours," Jami Nevius, a 3-year-old daycare teacher at Morton Pumpkin Place and part-time student at Illinois Central College, said.

"I originally was living in Minnesota and joined the Navy. When I joined, I had a ship out date. I moved down here 70 days before I had to ship out, but I got really sick with an infection in both my kidneys and my bladder. Both of my sinuses had infections, both ears had infections and I had a blood infection. I was in the hospital on antibiotics for seven days."

According to Mary Dollear, health promotion manager of the Illinois chapter of the Lupus Foundation of America, lupus is a chronic autoimmune disease.

"The best way to describe what it is, is to say it is a disease that attacks itself, it attacks the body. It is difficult because it makes it sound completely contradictory but that technically is what it does. Once you're diagnosed with it, there is no cure and you have it for the rest of your life," Dollear said. "It causes inflammation and tissue damage to virtually every organ in the body."

As of now, medical professionals are not sure how the disease is contracted, but according to Dollear, some believe there is a genetic component.

"In twin studies, if one twin has it, the other will be slightly more likely to get it. They won't necessarily, though. They think there is a genetic predisposition and then there is a trigger, but they are not sure what that trigger might be," she said.

Dollear said there are three different types of lupus. One is drug-induced, then there is cutaneous or discoid lupus that just affects the skin and there is systemic lupus that can affect any organ system in the body.

"It can attack the lungs and the heart, the central nervous system, the kidneys, the joints. It can travel," Dollear said. "Lupus can be fatal. It used to be a death sentence. We get a lot of people who call in who say they were diagnosed 12 years ago with only a 10 year life expectancy, so they assumed they would be dead. Now, the life expectancy is much longer because the treatments are much better."

After Nevius was discharged from the hospital, the doctors told her she should be better because the infections were under control, although she still suffered from fatigue and joint pain.

"They initially thought I had multiple sclerosis. So, I did my own research, went to the doctor and asked him to test me for lupus. He really didn't think that was what it was, but I didn't believe that. So I got tested," Nevius said. "There's no conclusive test, but after all the testing, it was determined that I had lupus."

"There is no one test for the disease. It is diagnosed primarily off symptoms, so it is really important to see someone specializing in it. There is also a lot of misdiagnosis for that reason. The average diagnosis takes four to five years and three to four doctors before someone is correctly diagnosed," Dollear said.

Since she was diagnosed, Nevius has suffered from many relapses.

According to Dollear, some symptoms can include achy joints, fever more than 100 degrees, arthritis, prolonged fatigue, skin rashes, anemia, pain in the chest, deep breathing, butterfly shaped rash across the skin or nose, sensitivity to light, hair loss, abnormal blood clotting problems, fingers turning white or blue in the cold, seizures and mouth and nose ulcers.

"It's everything from rashes to not being able to be out in the sun for any long length of time when I'm in a flare up because it is basically the feeling of someone pouring hot water on your skin," Nevius said. "I'm prone to kidney infections, so I have to keep a close eye on that. I have joint issues all the time, but that is usually the first indication of a flare up."

"Right now, I work as a daycare teacher. My energy level, in a flare up, plummets. I deal on a day-to-day basis with discomfort and pain in my joints. It's not enjoyable for me to take the kids outside in the summertime."

"Before, I had a job where I sat down a lot, which is not the best thing if you can help it. The more you move and the more action you make in your life, the healthier you're going to feel. It does affect me, but I try my hardest to nip it in the bud when I'm thinking about staying home. When kids bring in their germs and I get sick, it is a lot harder than it is for other people."

Currently, it is estimated that, out of the five million carriers of the disease worldwide, 1.5 million are in the U.S. and 65,000 are Illinois residents.

"Lupus is more common among minorities and in all cases, about 90 percent are women. The largest group being diagnosed now are women ages 18 to 24. They also think it may be caused by hormones," Dollear said.

No matter the cause, Nevius said she has experienced flare ups in many different forms that last different lengths of time.

"Flare ups can last different lengths of time, depending on how I react to it and how fast I can take care of myself. Sometimes, unfortunately, I'll have an infection I don't know about. This causes a domino effect. I'll feel tired for a week or so but will have a bladder infection. It doesn't show up like a normal infection because our body is working overtime because the antibodies that take care of infections are attacking our healthy ones too," she said.

"My worst flare up lasted six months. I am lucky because I'm on no steroids to handle or maintain my health. I have learned over the years to be a naturalist. I listen to my body and when I'm tired, I don't push myself. I treat myself to regular massages. A lot of times, people think it's weird, but I sleep with a down comforter because it maintains the heat in the body, which helps with the joint pain."

According to Dollear, there are many different treatments that can be provided, depending on the type of lupus the carrier has and what the symptoms are. One of the most common treatments given are steroids.

"I have had doctors who have tried to put me on medicine permanently and I tell them, 'No, I'm not doing that.' I have them put me on something to help, but I'm not giving up on the fact that I can do this myself without being put on medicine. I have been doing it for six years now," Nevius said.

Currently, Nevius is 33-years-old and married but does not have any children of her own, although it is something she hopes for in the near future.

"That is the other thing with lupus. You have a harder time getting pregnant because you're body looks at the pregnancy as an invasion," she said. "We have been trying for two years. We are on our second doctor and we're trying different things to change our odds before we give up and adopt. The bad thing is that, even with the percentage you have, after age 35, it goes down 15 to 20 percent more."

"I'm kind of running out of time, but as someone with lupus, I have to deal with it."

One reason Dollear said the disease that causes so much pain around the world is unknown is because there is no cookie cutter example or specific case to base it off of.

"Having two people with the exact same experience will probably never happen because it affects everybody differently," Dollear said.

With a husband, a job and classes to attend to, Nevius focuses her energy on the things she needs to do, rather than the pain and discomfort she feels.

"Right now, I just try to keep busy and try to live as normal of a life as I possibly can," she said.
www.LupusMCTD.com

[attachment deleted by admin]