This post is dedicated to Kim, a newly diagnosed lupus patient who asked me this morning where she could find accurate information about lupus. While writing my email reply to her question, I realized the information I was sending her could help any newly diagnosed patient. Special thanks to Kim for helping me remember the “adventure” of being a newly diagnosed lupus patient. I trust my response will be a help to her and others in their quest to find “the right stuff.”
I understand how difficult and possibly frightening it can be to come to terms with a new lupus diagnosis, especially if you do not know much about it.
When I was first diagnosed with lupus nearly 25 years ago, the Internet was just beginning (believe it or not) and information was not readily available about lupus. I went to the local county law library online medical research services to find out more, and my early search to understand lupus was difficult and frustrating.
Now, authoritative information about lupus is so much easier to find, because excellent patient resources are so readily available on the Internet.
First, I encourage any newly diagnosed patient to check out the most authoritative non-profit lupus organization site: The Lupus Foundation of America (LFA), where you will find a wealth of information and links to other reliable sources of information about lupus.
- Accurate lupus medical information
- Medication information
- Diagnostics tests
- Research updates
- Online moderated discussion group
- A monthly magazine, “Lupus Now”
- Links to LFA pages on social media
- More outstanding information!
Browsing the LFA site over and over is a great place to start learning about lupus and how to manage it!
Next, if you want to meet other lupus patients and find out more about lupus-related activities in your area, it is highly likely that there is a local chapter of the Lupus Foundation of America nearby.
Links and contact information to these state and local chapters are also available. Our Arizona Chapter has a great web site, several support groups, social activities and free information available to people in our area. Most chapters have similar information and services available to help lupus patients and their families in their areas learn more about lupus.
Also, please feel free to come back to my blog any time. I would welcome your comments about any of my posts, including any new questions that you might like to ask.
You also might want to check out some other lupus patients’ blogs. You will find links to some of these on my blog roll. A few are written by some amazing women who have a more recent lupus diagnosis than me, and you may find they share some of your current new patient experiences and questions.
Please realize that with proper treatment and correct information, lupus need not keep you from living a joyful and productive life. If properly treated, it need not shorten your life expectancy. Lupus is definitely not a death sentence, nor is it terminal, even though there is no “cure” for lupus yet.
Lupus is an autoimmune, systemic, non-contagious disease, that is medically similar in may ways to Rheumatoid Arthritis (RA). However, from time to time lupus may affect many more systems of your body than RA.
Lupus tends to flare up and then quiet down again, and when properly treated before and during flares, its progression and severity can be greatly minimized.
My prayers and best wishes to newly diagnosed lupus patients navigating through this new and challenging chapter of your lives!