The LFA has created an opportunity for patients to share their thoughts on what life with lupus is REALLY like, through a current research study. While Phase I is no longer accepting participants, Phase II will be up and running in the near future. Thus, I wanted to share the good news about the LFA's valiant efforts to enable healthcare providers to better understand how the disease truly affects its patients.
Here's the link for the study, and details from the LFA's website are below.
The Lupus Foundation of America, assisted by Evidera, a health outcomes research organization, is working to create a future tool that people with lupus can use to describe how their disease is affecting them. This tool may help healthcare providers better understand symptoms that are important to you. To build this tool we are conducting a research study to gain a better understanding of how people with lupus experience this disease.