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.
Thank you for publishing the results. It’s interesting to see the results.
I wish I could try this medication due to another flare.
If only there was a cure.
Thank you so much for reading! We were so excited to get the results online. And like you, we are hoping for a cure one of these days to end this horrible disease XOXO Marisa
Marisa, thank you for you information concerning Lupus patients. I have Lupus, RA, Sjorgrens, Raynauds, Meniers, Pagots Syndrome, Fibromyalgia and Osteoporosis. I have taken Plaqunil since 1998 when I was diagnosed with Lupus. I have tried numerous medications over a course of years along with the most recent Rutuxin infusions for the last 2 years. I had to stop those due to the damage the chemo was causing my body. After doing some research I has decided to try Hemp Oil. After a lot of time searching for a legitimate supplier and quality product I found the oil and started on the recommended dosage with approval of my dr. My health has improved 100%. I am still amazed at how much the oil has changed my life. I was curious to get your feelings on Hemp Oil and Lupus. It has no THC and is legal in the US. I would love for me people to be aware of the benefits of the oil. Thank you for your time and any information you may have.
Thanks, Bernadine for reading our study results. Personally, I have tried hemp oil/CBD with great results but I think the issue around this oil and chronic illness is more about obtaining legitimate CBD oil that is safe to use. I do hope (and feel it will) become more available in the next few years. I believe it can offer people relief from pain, etc. I am so happy to hear it worked for you! That’s awesome <3 Marisa
Thank you for publishing the results.. I completed the survey,, shared on both my main page, as well as my @LOIS Lickin LUPUS page,, and i have just now shared the results on both pages.. i really appreciate your page,, and your dedication towards finding a cure and promoting awareness.
Thanks, Kiwana! I’m so glad you were part of this survey! The results I feel are pretty eyeopening. Thank you for sharing it and always sharing posts from our LupusChick FB page. I so appreciate you XOXO Marisa