About Lupus

Lupus Coping Corner

Health Literacy and Lupus

Jessica Rowshandel, M.S.W.
Amy Caron
Project Director
Lupus Research Institute

What is an autoimmune disease?
How are biologics different from other medication used to treat lupus?
What is the difference between lupus and fibromyalgia?
What are some symptoms when lupus affects the lungs?

Do you have lupus or know someone who does? Can you answer the questions above? Many people – even those with lupus -- cannot. This is why, we at the S.L.E. Lupus Foundation, make it part of our mission to provide opportunities for you to learn about lupus – to help increase your health and science literacy.

The importance of health literacy is well summarized by the organization Improving Chronic Illness Care:

“While medication management is an important aspect of health literacy, the consequences of low health literacy can have a wider impact.  These may include failure to recognize signs and symptoms of illness, inattention to preventive care or self-management, and unwillingness to talk with medical providers out of fear or shame.”

In the past, I have written about the importance of knowing as much about lupus as you can and referred to the old saying, “Knowledge is Power.” Staying informed empowers you and enables you to speak up when necessary and advocate for yourself. Not only is it important to understand the facts about lupus, it is helpful to understand the type of research that is underway and how you might get involved.

Virtually “Attend” our First Scientific Conference for the Non-Scientist

The S.L.E. Lupus Foundation is a national coalition member of the Lupus Research Institute and took part in the LRI’s first scientific conference for the non-scientist, “Advancing Lupus Care Through Research and Advocacy.” The presenters shared information on lupus research studies they are working on, providing attendees with optimism knowing that many innovative and groundbreaking strides are underway.  Read more about all the studies the LRI has been funding here. And here you can see studies other researchers are working on.  

Here’s what two attendees to the conference have to say about the value of scientific studies:
“The first new drug for lupus, Benlysta was 50 years in the waiting. That’s a very good sign because now other pharma companies will then take up the cause of lupus knowing that a drug can be approved for lupus. I am very hopeful.” Jennie, LRI Board Member, Lupus Patient and Advocate

“Research is important because it is our future. The hope is to find a cure, but meanwhile, we need to find new, better treatments.” Julie, Lupus Patient and Advocate

Keep Learning

Knowing about the latest in lupus research and the many clinical studies you might consider joining can give you lots of reasons to stay hopeful. The S.L.E. Lupus Foundation provides several avenues for lupus education, including this column. We provide free live and online events including webinars that can be viewed any time and from anywhere. You can watch presentations from many of our free education events  on our YouTube channel. And view the entire “Advancing Lupus Care Through Research and Advocacy" conference or specific presentations. Stay in touch by subscribing to our e-newsletter and by subscribing to the LRI’s site to stay informed about lupus research.
 

Lupus Coping Corner

Disclaimer: The information provided by the S.L.E Lupus Foundation is for educational purposes only and should not be used for diagnosing or treating a medical or mental illness, nor be a substitute for professional care. Consult your healthcare provider if you have or suspect you may have a medical or mental health problem.

Amy Caron, MPH is a lupus patient and Project Director of the Lupus Research Institute provider education initiative.  She is not a physician or counselor.  The suggestions shared in this column are strictly opinions from the perspective of a lay person with lupus. Lupus is a very individualized illness; consult a healthcare professional before making any decisions about your care.

The S.L.E. Lupus Foundation does not provide any direct medical or psychological services nor recommend or endorse any particular treatment or therapy. The S.L.E. Lupus Foundation employees, consultants, and agents shall not be liable for any claims or damages, and expressly disclaim all liability of any nature for any action or non-action taken as a result of the information generated by the S.L.E. Lupus Foundation programs and its website, as well as the S.L.E. Lupus Foundation Facebook and Twitter pages.