One of the aspects of the Lupus community I love the most is our collective voice. Lupus patients aren’t afraid to speak out and offer themselves and their experience to research. We are so thankful for this at LupusChick. As many of you know, and many of you were a part of, LupusChick was part of one of the largest Lupus patient online surveys ever conducted. It began with our senior writer, Maria Mongiardo, applying for a LEEP grant through her college, Clark University in Boston. Her goal was to study the impact Lupus had on a patient’s life, in addition to conducting an analysis on their drugs, and what their experiences have been like with the newest Lupus drug, Benlysta.
Once Maria was approved for the LEEP grant, she went straight to work. It was a pleasure to come alongside Maria and help formulate questions for the online survey. After several months of designing the questionnaire and testing an unofficial survey, the official survey was complete.
The 2016 survey, titled, “The Analysis of Lupus medications, life impact and the drug Benlysta,” was released and open to responses from June 13, 2016, to July 26, 2016. It was promoted via LupusChick’s website and social media, on The Lupus Foundation of America’s Survey and Studies portal, and on various Lupus pages via social media. During this time frame, 2,316 Lupus patients began the survey and 1,775 Lupus patients completed the survey in its entirety and let their voices be heard.
I want to give a huge shout out to Maria Mongiardo, for not only being a key player in the success of the LupusChick brand, but for having a heart for Lupus patients and spending the past four years of her college career researching and working towards bettering their lives. About to begin her Masters in Public Health, I know she will make an impact on this world!
Here are some of the highlights from the official survey results I want to share with you. Some of these answers are alarming and highlight the need for better care and options for Lupus patients. We must continue to speak out and let our voices be heard in order to get the care and medical treatment we need to survive and thrive with Lupus.
Regarding Mental Health and Lupus
Several of the answers above were important to share, as they gave a deeper look into having anxiety and battling with depression when living with a chronic illness. In addition, having almost half of the survey respondents share they have considered self-harm or suicide since receiving a Lupus diagnosis is alarming, and highlights the need for better counseling, education in coping mechanisms and more resources available to patients who are struggling.
Lupus and Pain
Other areas we believed were important to highlight here included questions about employment and ease of finding a job, impact of chronic illness on social life, and a closer look into responder’s experience with Benlysta.
Benlysta, Other Medications and Lupus
The above survey shots were snippets of many subjects important to a Lupus patient. You can email Maria Mongiardo directly for the full survey, abstract, and other information. Her email is Mmongiardo@clarku.edu . LupusChick would like to thank Maria for all of her hard work on this survey, in addition to thanking the LEEP grant and Clark University for helping her complete this incredibly informative work.