Learning about systemic lupus erythematosus (SLE or lupus) can help you become aware of specific symptoms and the steps you can take to improve your health. Information can be found in books, on reliable websites and through support groups.
By far, the most immediate resource is the Internet. In fact, the Internet has changed how people learn about lupus. Type the word “lupus” in the Google search engine, for example, and it reveals millions of hits in a fraction of a second. With so many hits, you have to wonder about the reliability of the information. How do you know which sites to trust?
Tips On Finding Reliable Research Sources
Anyone can set up a website and publish anything they want about lupus, truth or bunk, so before you soar into cyberspace, you need to know how to evaluate the information you find. The Health on the Net Foundation and the Internet Healthcare Coalition offer these suggestions for safe surfing:
- Click on websites created by major medical centres, national organizations, universities and government departments. They provide unbiased information based on major research studies.
- Steer clear of sites that rely on personal testimonials, push a single viewpoint or sell “miracle” cures. If something sounds too good to be true, it probably is.
- Visit several sites and compare the information before forming your own conclusions.
- Check the dates. The date when the page was first published or last modified should be clearly displayed. Medical knowledge is always evolving, so look for the most recent information you can find.
- Look for documentation and attribution. Sites should list their information sources, and contributors should be identified along with their affiliations. Authors should stand by their material by providing their e-mail address and other contact information.
- Make sure that the advertisers and sponsors of the site are separate from the editorial content. If you’re not sure whether an advertiser has influenced the content, ask: Does the advertiser have anything to gain from supporting one viewpoint? If it’s your credit card number they have to gain, recognize that the content may be biased.
- Don’t let a comprehensive list of links fool you into thinking that several organizations back the site’s claims. A website can link to any site the creator wants. A link to Health Canada, for example, in no way implies endorsement from Health Canada.
- Recognize the limitations of an e-doctor. Online healthcare professionals cannot recommend a treatment without a physical exam and labtests. However, they may offer insights that you can discuss with your physician at your next appointment.
Stay Up-To-Date With Current Research
Surfing the Internet is an excellent way to learn more about research in progress. Scientists are beginning to unravel some of the elements involved in lupus, including genetic, environmental and hormonal factors. During the past decade, there has been a tremendous amount of progress, and the number of studies on this disease has increased exponentially.
Many researchers are investigating the causes of lupus and are looking for a cure. At medical centres worldwide, including centres in Canada, research has led to improved tests and techniques for diagnosis and better methods for predicting flares. These allow doctors to start treatment sooner, which improves patient health.
As part of research, many centres collect and store patient information and statistics. This data can help both doctors and people with lupus make better-informed decisions about treatment of a wide range of symptoms. The Canadian Network for Improved Outcomes in Systemic Lupus Erythematosus (CaNIOS) unites Canadian lupus investigators across the country through collaborative research. CaNIOS has several research projects underway.