More Research, More Treatment | #LupusResearchMatters
More Research, More Treatment
#LupusResearchMatters
May 2nd - 3PM EST
The #LupusChat Influencers
Welcome to the #LupusChat recap! 46 participants joined us on May 2nd, 2021 and made their voices heard, generating 1,305 tweets and over 10.550 million impressions online.
In this conversation we discussed the impact medical research has on our overall health and what we'd like to see from it in the future with rheumatology researcher, Dr. Jillian Richmond, PhD (@UMassLupus). We were excited to have Dr. Richmond join us! She’s an Assistant Professor at UMass Medical School. Her research focuses on skin manifestations of lupus and other autoimmune diseases.
We went over some #LupusChat guidelines to help our conversation flow smoothly, then got our #LupusChat party started by sharing our name, where we are from, a little bit about ourselves, and our favorite show to binge-watch. Here is a recap of our conversation and here are just a few of the wonderful people who joined us at #LupusChat.
Hello #LupusChat fam! My name is Jillian and I am a researcher at @UMassMedical in Worcester, MA. My favorite show to binge-watch is Psych! 🍍 pic.twitter.com/xFQTVMo6PU
— UMass Lupus (@UMassLupus) May 2, 2021
I’m Kate from Portland. Some fave binge watches are Veep, the Office, and the Americans. #LupusChat
— Kate Sattler | Sweet Freeze (@katesattler) May 2, 2021
My name is Jessica and I am from New Jersey! I'm a writer with a passion for learning, and my most recent binge-watching shows have been Cruel Summer and The Circle. #LupusChat
— Patient Worthy (@PatientWorthy) May 2, 2021
Hi... I'm Elizabeth from NJ.
— Caring For Lupus (@CaringForLupus) May 2, 2021
My connection to lupus is through my daughter Miah.
My kids favorite series to binge-watch is Dragon Ball #LupusChat #lupusawareness #LupusAwarenessMonth #Lupus https://t.co/efdEaT3lBR pic.twitter.com/9Y8ywQIvck
Hola #LupusChat! It's Stephanie from Atlanta. Lupus has lived with me for 8 years and I just finished binge-watching The Baker & The Beauty on Netflix and I really want a second season.
— itsmorenamorena (@itsmorenamorena) May 2, 2021
Hey #LupusChat! I'm Sofia from Portugal and it's good to be back here 💜 https://t.co/AWd36D3Igh
— Sofia (@abssofia) May 2, 2021
Then we began with question 1.
Q1. What is the key point of research? How does it influence healthcare and affect our lives and overall health?
A1 : Research helps answer questions. It separates fact from fiction and disinformation. Treatments and cures come from research. #LupusChat
— RaquelRoschell (@raquelonpurpose) May 2, 2021
A1: IMO the key point of research is to understand Lupus in order to improve the lives of lupus patients. The more we know, the better. #LupusChat
— Bella Reeves (@bellaproduces) May 2, 2021
A1: Research should affirm the dignity and unity of humanity. We are all just people, which is great news. There is plenty of health to go around just as soon as we're ready to make that happen. 💕
— Dawn M Gibson (@DawnMGibson) May 2, 2021
#LupusChat https://t.co/4hPPldJqhG
A1. Research influences our health and our lives, because research influences treatments that are available, as well as how they are used. Research also determines disease monitoring methods. #LupusChat
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) May 2, 2021
A1: Medical #research influences healthcare in many ways. It can be used to understand a disease process, to identify and test new treatments, to determine how best to educate patients or physicians, or to monitor a patient’s disease activity. #LupusChat 🧪🔬
— UMass Lupus (@UMassLupus) May 2, 2021
A1: (continued) Medical research can affect our lives and overall health by informing ways to be and stay healthy, or by helping to manage or treat a condition or disease that someone may be experiencing. #LupusChat
— UMass Lupus (@UMassLupus) May 2, 2021
Research is integral to changes in medical care and changes in social norms and perception. We explored this more in Question 2.
Q2. In what ways has progress in research changed your perception of certain aspects of lupus and chronic illness? Please share examples if you can.
A2: Seeing the "quick" development of the Covid vaccines, but realizing they were built on years and years of research, does make me hopeful that effective treatments and cures for Lupus are possible. That the research is not being done in vain. #LupusChat https://t.co/pJkx3fBrpI
— itsmorenamorena (@itsmorenamorena) May 2, 2021
A2. Progress in #medicalresearch has led to new FDA-approved therapies for lupus. Technology, like AI and machine learning, is also being used to create algorithms to predict other health issues associated with lupus. This could help with early diagnosis and treatment. #LupusChat
— Patient Worthy (@PatientWorthy) May 2, 2021
A2. I was diagnosed in 1995. There were few medications and treatments available. Especially for lupus nephritis/kidney. Now there's clinical trials for lupus medication. And better patient-doctor communication. More needs to be done. #LupusChat
— Ivey McClelland(she/her)🌈🌈🌈 (@iveyjanette_207) May 2, 2021
A2: In the 60's when my mom's sister was dx'd w/ Lupus the 5 yr survival rate was literally 50/50. I just passed my 5 yr mark, my Mom was dx'd in '09. #StillHere ...Am I out doin' cartwheels every day? No. But Generally I get a few decent hrs ea day AND I'm tf alive? #LupusChat pic.twitter.com/Aoqal1Fkyc
— 🧼✋🏽🤚🏽BBG😷🆙 (@TheBigBrownGirl) May 2, 2021
A2: One specific example of #research that I have observed go from bench to bedside during my career is #cancer immune therapy: some patients are essentially cured from their cancer, which would have been unheard of in years prior. #LupusChat
— UMass Lupus (@UMassLupus) May 2, 2021
A2. It’s helped me overcome some of my own ignorance- like my initial perception of the COVID vaccine.
— Tinu (@Tinu) May 2, 2021
Thinking of it like the flu vaccine helped. #LupusChat https://t.co/X6qbXkLqzE
After spending time discussing how research has made changes over the years, in Question 3 we examined who can help propel things forward.
Q3. What are some ways that patients can help advance research?
A3: Some ideas for people interested in #lupus #advocacy & #education: check out the LRA @LupusResearch and LFA @LupusOrg resources, connect with your local chapter, and/or participate in a lobbying event. #LupusChat
— UMass Lupus (@UMassLupus) May 2, 2021
Absolutely. My rheumy asked about donating to a biobank last month. They use these blood/tissue samples in lab research for pre-clinical stuff. #LupusChat
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) May 2, 2021
A3 : As patients we can participate in clinical trials. We can advocate for research funding by reaching out to our elected officials - Senators, House Reps. #LupusChat
— RaquelRoschell (@raquelonpurpose) May 2, 2021
A3: Patients can advance research by:
— Dawn M Gibson (@DawnMGibson) May 2, 2021
1. Answering surveys.
2. Reporting adverse events.
3. Doing research studies & trials.
4. Sharing their ideas, questions, & concerns with foundations, advocates, & researchers.
5. Explaining WHY they've declined participation.
#LupusChat https://t.co/6DKiTojmjh
A3: Some ideas for people interested in participating in #research studies: check out studies that are enrolling at your local hospital or university, and check out https://t.co/0gcd2Thsa9. #LupusChat
— UMass Lupus (@UMassLupus) May 2, 2021
A3: I think we can have an important impact by spreading awareness and sharing information about Lupus. Even if we just reach a small number of people, that can make a difference. We can help stimulating the interest in know and discover more #LupusChat https://t.co/b00UfhuDEq
— Sofia (@abssofia) May 2, 2021
We took a step inward for Question 4. There we shared a bit more about our personal experience with Lupus.
Q4. Have you noticed a difference in how your treatment or disease activity was monitored, from when you were first diagnosed until now? How do you think lupus research has influenced this?
A4: I think studies have shown that long term usage of steroids can have severe side effects (cataracts, osteoporosis, avascular necrosis) which is why the goal for most physicians is to minimize steroid usage in their patients. #LupusChat
— Tiffany (@TiffanyAndLupus) May 2, 2021
A4 #LupusChat being treated at a major university medical center has meant that all my Dr are actively doing research and up on the latest meds. For instance they are very careful with steroids and faster to try biologics.
— staff of one (@hand_to_eye) May 2, 2021
A4: Our lab is using new techniques to measure #lupus disease activity. Hoping to publish soon! #LupusChat 💜
— UMass Lupus (@UMassLupus) May 2, 2021
A4: Yes, partially because I switched Rheumys. The Avise Test I get now provides so much more clinical information. Both my Rheum and I are better informed with each visit. #LupusChat https://t.co/VuBlCxrBQb
— itsmorenamorena (@itsmorenamorena) May 2, 2021
A4. YES! Big difference now than in 1995. I never had a rheumatologist until 2010. I've had 3 kidney doctors. Plus there's online patient portals like MyChart,so everything is up to date. Now I have a full TEAM of doctors. #LupusChat
— Ivey McClelland(she/her)🌈🌈🌈 (@iveyjanette_207) May 2, 2021
A4: absolutely. I started w a small family doc/rheum team. They were great but everything changed when I went to @jhrheumatolog. My docs were up to date on latest research, my care plan was so detailed and through. I could reach my doc 24/7 via mychart. List goes on. #LupusChat
— Bella Reeves (@bellaproduces) May 2, 2021
Then it was time to look forward! For Question 5, as a community we discussed what the future of research should look like!
Q5. Is there a particular aspect of your chronic illness that you'd want new research studies to look into?
A5 : I would like to know more about causes of inflammation and joint pain. How does it all really work? Why one hip and not the other? I don't feel satisfied with answers I get. #LupusChat
— RaquelRoschell (@raquelonpurpose) May 2, 2021
A5: Painsomnia, nausea, the elusive measure of ✌️🏽doing too much✌️🏽, the predictability of the severity of symptoms, a Lupus Like-er™️ (an approximating experiencer for those who can't fathom the reality & all encompassing nature of it) & obvi, a cure. #LupusChat
— 🧼✋🏽🤚🏽BBG😷🆙 (@TheBigBrownGirl) May 2, 2021
A5: Yes, I’d like the neurological aspect of lupus to be researched more. Specifically, how lupus affects the brain, memory, and mental health. I want to know more about how to combat/treat brain fog and psychological aspects like psychosis. #LupusChat
— Tiffany (@TiffanyAndLupus) May 2, 2021
A5: I’d also like more research on the connection between nutrition and lupus. Like, is there specific nutrition that is optimal for lupus disease management and whether certain foods aggravate disease activity. #LupusChat
— Tiffany (@TiffanyAndLupus) May 2, 2021
A5. Fatigue. Kidney/lupus nephritis. Joint pain. #LupusChat
— Ivey McClelland 😷😷😷😷😷 (@iveyjanette_207) May 2, 2021
A5: there is so many things I would like research to focus on but first and foremost - Fatigue!!! And ways to minimize organ damage #LupusChat
— Bella Reeves (@bellaproduces) May 2, 2021
Finally came our last question of the day!
Q6. Using the hashtag #LupusResearchMatters, can you share how new research would improve your quality of life?
A6: #LupusResearchMatters because EVERY patient deserves a speedy & accurate DX.
— Dawn M Gibson (@DawnMGibson) May 2, 2021
EVERY patient deserves adequate treatment that halts disease progression.
💕💕💕#LupusChat https://t.co/wryeeXfrmv
A6. #LupusResearchMatters New research potentially improves quality of life and longevity for people with lupus. And helps continue looking for the ultimate cure. #LupusChat
— Ivey McClelland 😷😷😷😷😷 (@iveyjanette_207) May 2, 2021
A6: #LupusResearchMatters b/c there is still much to learn about how lupus affects us. More research means more opportunity for new treatments. We must use our voices to fight for more funding, let our health orgs, medical researchers, and Gov’ment know it’s needed. #LupusChat pic.twitter.com/c4xXDW7cSx
— Tiffany (@TiffanyAndLupus) May 2, 2021
A6: I perform #lupus #research because I hope to one day find a better, more durable treatment for my friends who have lupus. #LupusResearchMatters #LupusChat 💜🔬👩🔬
— UMass Lupus (@UMassLupus) May 2, 2021
A6: #LupusResearchMatters Treatment for fatigue, cognitive issues, and sun sensitivity esp would allow me to work full-time, create, be financially self-sufficient, go outside, and more. #LupusChat
— Kate Sattler | Sweet Freeze (@katesattler) May 2, 2021
A6: #Facts #LupusResearchMatters #LupusChat pic.twitter.com/5Ty9L7yfeo
— 🧼✋🏽🤚🏽BBG😷🆙 (@TheBigBrownGirl) May 2, 2021
Thank you for reviewing our recap! You can still participate in this Twitter conversation by clicking on the LupusChat icebreaker prompt and questions above and replying. Make sure to use the format "A1. This is my answer. #LupusChat" and add the hashtag to each of your responses.
Enjoy the rest of your day & remember to practice a little (or a lot) of self-care today.
It is absolutely okay to take time for self care.
You can’t do things well if you don’t feel well.