There are hundreds of medical websites out there that can give you basic information about lupus. PubMedHealth, Mayo Clinic, and WebMD are some of the sites I visited when I knew absolutely nothing about lupus. In fact, a print-out from the Mayo Clinic is what my doctor gave me when I first got diagnosed. After a while, though, the information was all the same and I wanted to know more. I broadened my search and found a bunch of other great resources.
These are a few of my favorites:
The Lupus Association - This site does a great job of explaining the basics of Lupus and Sjogen's syndrome in a well-laid-out, easy-to-understand format. It is quite comprehensive without being over-whelming.
New York Times - Systemic Lupus Erythematosus - This is one of the most in-depth explanations I have found for Lupus (SLE). It does a good job of explaining the science behind the disease in layman's terms.
But You Don't Look Sick - Christine Miserandino explores the human aspect of living with an "invisible" disability or chronic illness. Her famous spoon theory attempts to share with others what it is like to live with lupus. The site is full of resources, tips, and humor.
More Lupus Resources:
There are also a number of organizations and non-profits that are dedicated to Lupus education and research:
Could I Have Lupus? - A government website created by the Department of Health and Human Services to educate the public about lupus, its symptoms, and how to get help.
Lupus Foundation of America - The Lupus Foundation of America, Inc. (LFA) is the foremost national nonprofit health organization dedicated to finding the causes of and cure for lupus and providing support, services and hope to all people affected by lupus.
Lupus Alliance of America - The Lupus Alliance of America is a group of agencies that have come together for the express purpose of providing needed services to those affected by lupus within their local communities.
Alliance for Lupus Research - The Alliance for Lupus Research (ALR) is dedicated to find better treatments and ultimately prevent and cure systemic lupus erythematosus (SLE, or lupus), a debilitating autoimmune disease. ALR is 100% dedicated to research (versus other sites that provide educational resources and patient support) -- this allows them to put all of their efforts (and donations) towards research. Consider joining them at one of their fundraising events to help find a cure!
Other Lupie Blogs:
Because lupus is such a mysterious and varied disease, I find it interesting to read other lupie blogs. It gives me insight into what kind of symptoms, challenges, and triumphs they have had with lupus. It is also nice to hear the personal/emotional side of the disease, which is often omitted from educational and medical sites.
Sara Gorman - Despite Lupus
How Can I Explain it to You? - The Life of a Grad Student with Lupus
The Lupe
Lupie Loops
Living Lupie
Cori's Lupus Updates
The Lady with Lupus
Lupus Family Network - I love that this is a site created by a lupie's husband because he realizes that lupus affects the family, not just the person who has it
