May 13, 2009

Lupus little known disease

Posted in Between Us column, Health at 7:42 pm by dinaheng

Watching media coverage about swine flu has been painful.


First, there were small stories announcing the existence of the flu, with assurances that there was nothing to worry about. Then, as health officials sounded the cry about its spread, the media took up the call and amplified it like crazy.


Every newscast and story warned of the possible danger, number of cases identified in each state and school closings… constantly. Then, just as predictably, the stories tapered off and attention moved elsewhere.


I noticed how heightened people’s fears about swine flu had become when I was standing in the check-out line of a pharmacy a couple of weeks ago.  When I cleared my throat, a man passing by behind me admonished, “You should cover your mouth when you cough.” I didn’t bother explaining that I wasn’t coughing.


It’s important to share public health information. But do we have to play on people’s fears while we do it? There are many diseases that most of us know little about unless we or a loved one have it, or unless a publicity campaign generates interest. Take lupus, for example.


May is National Lupus Awareness Month, and Imelda Balboni, M.D. ,Ph.D. has a positive story to share about this rare auto-immune disorder that can cause inflammation, pain and damage in various part of the body.


“When I was young, I was diagnosed with lupus, though I don’t necessarily have lupus,” says Balboni, a pediatric rheumatologist at Lucile Packard Children’s Hospital at Stanford University. “I’ve been taking medicines for lupus since I was a teenager. 


“Most of the symptoms have gone away, except for the arthritis. It’s possible the medicines helped, and in my case, perhaps the lupus was very mild. Some people do die from lupus, but most do really well with treatment.”


As a teenager, Balboni researched her illness, using it as the topic of high school research papers. Today, she’s studying the auto-antibodies in lupus with a goal of identifying patients or people at risk for lupus early so that patient-specific therapies can be designed.


She says there’s no one test for lupus, so the disease is diagnosed is verifying various signs. In children, for example, if a patient has 4 of 11 criteria, the child is 99 percent likely to have lupus.


Criteria include such things as skin rashes, photosensitive rashes, nasal or oral ulcers, blood abnormalities and other symptoms. Lupus is relatively rare, and 90 percent of those afflicted are women, usually diagnosed between the ages of 15 and 45. In the United States, lupus affects minorities more than Caucasians.


“It can be difficult to diagnose because adults can have confusing symptoms that look like other things,” Balboni says. “Often, people are misdiagnosed before it’s correctly identified. There’s probably a genetic susceptibility and a trigger that ultimately develops the disease.”


While there is no cure for lupus yet, Balboni says treatments have gotten better, and emphasis is now on dealing with the long-term complications of the medicines and the disease itself.


“I probably wouldn’t be a pediatric rheumatologist if I hadn’t been diagnosed with lupus,” Balboni says. “My whole family was in an uproar because I had lupus. I was a rebellious teenager who didn’t want this disease that caused me to be dragged to doctors to have blood work done. I didn’t like being told I always had to wear a hat so that the sun wouldn’t get on my face. But it also helps me to understand my patients today. I relate to them a lot.”


Fortunately, lupus is fairly rare. Media coverage will probably never be widespread. But for those who have lupus, the work of doctors like Balboni will always be welcome news.




  1. Hi,
    Actually 1 in every 500 people have Lupus mostly woman and the numbers keep rising yearly because we have an epidemic of autoimmune diseases. ,
    Just a few observations I have made. Have you noticed that modern medicine says they need your money to find a cure and yet they have not found a cure in 60 years, 0. And autoimmune diseases like Lupus disease are interesting there are approximately 80 to 100 with another 40 waiting for a name and if you get one you will get another and so on. And medical science cannot explain why we have this autoimmune epidemic. You can trigger one of them just by having an auto accident, taking aspirin or medication or by starting a new exercise routine, even too much stress says latest research. Naturopathic medicine says, “Look for the root, it is in the basics beginning with what is on your fork, what toxins are in your body, what exercise do you do, what stress is in your life, what is your spiritual base”. Scientific arrogance has led us down the wrong path we better stop and take a close look at what is happening. This month 150 new chemicals will be added to the 85,000 which are part of the autoimmune problem. They will be added too industry with no oversight control at all. Autoimmune disease is the worst kind of contradiction; for an Lupus sufferer you are attacking your body with your immune system, a world upside down. God bless you in your search.

    • dinaheng said,

      Thanks for your comments. It’s very interesting how diseases grow, yet cures do not… a challenge for us as humans to look at what really ails us.

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