I think that one of the very first things that most people do when they discover that they may have a disease such as Systemic Lupus Erythematosus, SLE for short, is to look for more information. They want to know what the symptoms are, how they got it, what is the treatment, is it fatal, is there a cure, is it genetic, and what can I expect in the future? All of these questions that they quite often forget to ask their Doctor.
There are plenty of places on the web to find information, but sometimes what you find is simply overwhelming, and you don’t know what is true. And believe me, there are plenty of scam artists out there trying to sell you a quick cure. Some of them even have an M.D. behind their name. The Alliance for Lupus Research has a good list of links and resources available that is worth taking the time to check out.
Here are a few of the links that they have listed:
- Arthritis Foundationwww.arthritis.org
Information on the prevention, diagnosis and treatment of lupus and various forms of arthritis.
Centerwatch Clinical Trials Listing
Clinical Trials sponsored by government and industry.
Could I have Lupus
The Could I Have Lupus? campaign is designed to heighten awareness and create a sense of urgency about lupus. With the help of women who are actually living with lupus, we are sending a message to women who are suffering from lupus symptoms – that they can find support, hope and, most of all, answers. They just have to start by asking the right question: “Could I have lupus?”
Run by Rheuminations, Inc., DxLupus is a patient-focused website serving people with lupus and those who care for them…
The Lupus Initiative
Free resources to learn more about how to address the persistent gaps between the lupus-related health status of minorities and non-minorities, women and men, and those above and below the poverty line.
- A non-profit organization offering a unique service: free information and free psychological support. Our aim is to meet the needs of those affected by lupus and this includes researching into the psychological aspects and designing a “support” service which includes using the internet as a medium.
Resources are always a valuable commodity. Medicine changes constantly and it is helpful to know what is going on in regards to research. Please visit their site if you would like more information about them and to find additional resources that they have listed. What I have above is just a few of them. Alliance for Lupus Research
Please always take the time to check with your own Physician about any information that you find, as well as where you find it. If you have a link and you find something new, you might even be helping them out. But never rely totally on online sources for your information. There is one thing that one of my nursing instructors always drummed into our heads, “the patient didn’t read the book.” What she meant by that is that every person is an individual, not everything works the same way one everyone. If it did there would not be the need for such a wide variety of treatments and everyone would have the same symptoms. I am sure that you have realized by now that you are unique. Please don’t assume that what works in a research setting will necessarily work for you. But do take the time to further your education. Knowledge is power!
- Wellness, attitude, stress and lupus (lupuschronicles.com)
- The immune system of lupus (lupuschronicles.com)
- Lupus is the diagnosis; can you explain autoimmunity? (lupuschronicles.com)
- “We’ve just been introduced…” (lupuschronicles.com)
- Lupus is the diagnosis; what is lupus? (lupuschronicles.com)