Understanding the impact of lupus on patients’ lives

It’s Lupus Awareness Month, a time when the lupus community comes together to draw attention to this rare, chronic, autoimmune disorder. Earlier this month, we had the pleasure of hosting more than one dozen lupus bloggers and patient advocacy groups for an in-person and virtual GSK lupus summit where we discussed issues facing the lupus community. 

Approximately 178,000 Americans have Systemic Lupus Erythematosus (SLE or lupus), which can affect almost every part of the body and cause extreme fatigue, painful and swollen joints, unexplained fever, and skin rash. It also can lead to kidney failure, heart and lung inflammation, central nervous system abnormalities, inflammation of the blood vessels and blood disorders. All these symptoms can flare unpredictably and often are invisible to others. 

The summit was a great opportunity for us to share the work we are doing in SLE and the US findings from a recent online survey of 905 lupus patients, caregivers and physicians from the US, Canada, France, Germany, Italy and Brazil. It included 200 SLE patients, 100 caregivers and 75 physicians in the US. The summit participants agreed with many of the key findings:

  • Patients have difficulty describing their lupus symptoms to their physician and under-report the impact of lupus on their lives,
  • Better communication between patients, caregivers and physicians is essential to treating lupus,
  • There is a need for more online resources and a stronger, more connected lupus community.  

Most importantly, the summit provided us the chance to hear from them what information and resources they and their readers want and need.  

We can all help lupus patients by educating ourselves about the condition and gaining a better understanding of what it’s like to live with a chronic disease. Visit lupus.org, lupusresearchinstitute.org, and lupusresearch.org for more information.