Just wrapped up a panel talking about disability in #GameAudio at #GameSoundCon, and I got to give a shout out to my favorite support group #LupusChat 💜
October 28, 2025 at 10:01 PM
Just wrapped up a panel talking about disability in #GameAudio at #GameSoundCon, and I got to give a shout out to my favorite support group #LupusChat 💜
So excited about Dr. Daniel Whibley’s presentation at #ACR25 on Cognitive Dysfunction and how it Manifests in those living w/Fibromyalgia. He shared several ways to conduct baseline cognitive tests.
cc: @ladaorg.bsky.social @lupuschat.bsky.social #LADAorg #LupusChat
cc: @ladaorg.bsky.social @lupuschat.bsky.social #LADAorg #LupusChat
October 28, 2025 at 3:40 PM
So excited about Dr. Daniel Whibley’s presentation at #ACR25 on Cognitive Dysfunction and how it Manifests in those living w/Fibromyalgia. He shared several ways to conduct baseline cognitive tests.
cc: @ladaorg.bsky.social @lupuschat.bsky.social #LADAorg #LupusChat
cc: @ladaorg.bsky.social @lupuschat.bsky.social #LADAorg #LupusChat
Absolutely thrilled to catch this #ACR25 session on the Cognitive Function in Rheumatic Diseases. The first presentation was given by, patient advocate, Mary Alore sharing her experience with brain fog.
Cc: @ladaorg.bsky.social @lupuschat.bsky.social #LADAorg #LupusChat
Cc: @ladaorg.bsky.social @lupuschat.bsky.social #LADAorg #LupusChat
October 28, 2025 at 3:18 PM
Absolutely thrilled to catch this #ACR25 session on the Cognitive Function in Rheumatic Diseases. The first presentation was given by, patient advocate, Mary Alore sharing her experience with brain fog.
Cc: @ladaorg.bsky.social @lupuschat.bsky.social #LADAorg #LupusChat
Cc: @ladaorg.bsky.social @lupuschat.bsky.social #LADAorg #LupusChat
Random but...Prednisone really changed the shape of my face, but I'm used to it now. Heliocare improved my skin. Benlysta restored my hair to health.
Brought to you by the Spoonie Beauty Hour 🤭 #LupusChat #Lupus
Brought to you by the Spoonie Beauty Hour 🤭 #LupusChat #Lupus
October 27, 2025 at 10:50 PM
Random but...Prednisone really changed the shape of my face, but I'm used to it now. Heliocare improved my skin. Benlysta restored my hair to health.
Brought to you by the Spoonie Beauty Hour 🤭 #LupusChat #Lupus
Brought to you by the Spoonie Beauty Hour 🤭 #LupusChat #Lupus
Learning a lot in an #ACR25 session led by @ireneblanco.bsky.social & hearing Patient Advocate, Grayson Schultz speak on the many barriers LGBTQIA+ individuals face while trying to access healthcare & how to navigate rheumatology care as an LGBTQIA+ patient. #LADAorg #LupusChat @ladaorg.bsky.social
October 27, 2025 at 8:12 PM
Learning a lot in an #ACR25 session led by @ireneblanco.bsky.social & hearing Patient Advocate, Grayson Schultz speak on the many barriers LGBTQIA+ individuals face while trying to access healthcare & how to navigate rheumatology care as an LGBTQIA+ patient. #LADAorg #LupusChat @ladaorg.bsky.social
Surprise @lupuschat.bsky.social spotting in Dr. Martha Delgado’s #ACR25 session! An FYI, #LupusChat gave a presentation at the NIH NIAMS annual clinical research event in both 2019 and 2024 on the importance of utilizing digital tools to build communities and advance health literacy. #LADAorg
October 27, 2025 at 8:01 PM
Surprise @lupuschat.bsky.social spotting in Dr. Martha Delgado’s #ACR25 session! An FYI, #LupusChat gave a presentation at the NIH NIAMS annual clinical research event in both 2019 and 2024 on the importance of utilizing digital tools to build communities and advance health literacy. #LADAorg
Dr. Martha Delgado gave a great #ACR25 presentation focused on improving patient participation in clinical trials in Latino communities. She shared barriers for both patients & providers as well current efforts to remove barriers.
cc: @ladaorg.bsky.social #LADAorg @lupuschat.bsky.social #LupusChat
cc: @ladaorg.bsky.social #LADAorg @lupuschat.bsky.social #LupusChat
October 27, 2025 at 6:42 PM
Dr. Martha Delgado gave a great #ACR25 presentation focused on improving patient participation in clinical trials in Latino communities. She shared barriers for both patients & providers as well current efforts to remove barriers.
cc: @ladaorg.bsky.social #LADAorg @lupuschat.bsky.social #LupusChat
cc: @ladaorg.bsky.social #LADAorg @lupuschat.bsky.social #LupusChat
If you see me at #ACR25 ask me for a #LupusChat sticker!
October 27, 2025 at 6:22 PM
If you see me at #ACR25 ask me for a #LupusChat sticker!
Patient experience researcher & advocate extraordinaire, Monique Gore-Massy gave a great presentation at #ACR25 on the importance of sexual health being an essential part of patient care! #LADAorg #LupusChat
cc: @ladaorg.bsky.social @lupuschat.bsky.social
cc: @ladaorg.bsky.social @lupuschat.bsky.social
October 27, 2025 at 3:10 PM
Patient experience researcher & advocate extraordinaire, Monique Gore-Massy gave a great presentation at #ACR25 on the importance of sexual health being an essential part of patient care! #LADAorg #LupusChat
cc: @ladaorg.bsky.social @lupuschat.bsky.social
cc: @ladaorg.bsky.social @lupuschat.bsky.social
Dr. Jillian Rose is giving a remarkably informative presentation on Sexual Health & Rheumatic conditions.
🔹 90% of women w/SLE have reduced arousal
🔹56% of women w/Sjogren’s experience vaginal dryness
🔹89% of men w/Systemic Sclerosis experience erectile dysfunction
#ACR25 #LADAorg #LupusChat
🔹 90% of women w/SLE have reduced arousal
🔹56% of women w/Sjogren’s experience vaginal dryness
🔹89% of men w/Systemic Sclerosis experience erectile dysfunction
#ACR25 #LADAorg #LupusChat
October 27, 2025 at 2:21 PM
Dr. Jillian Rose is giving a remarkably informative presentation on Sexual Health & Rheumatic conditions.
🔹 90% of women w/SLE have reduced arousal
🔹56% of women w/Sjogren’s experience vaginal dryness
🔹89% of men w/Systemic Sclerosis experience erectile dysfunction
#ACR25 #LADAorg #LupusChat
🔹 90% of women w/SLE have reduced arousal
🔹56% of women w/Sjogren’s experience vaginal dryness
🔹89% of men w/Systemic Sclerosis experience erectile dysfunction
#ACR25 #LADAorg #LupusChat
Up early at #ACR25 sitting in on sessions about sexual & reproductive health and rheumatic conditions. Sessions are being led by Dr. Lisa Sammaritano, Dr. Jillian Rose, and Patient Advocate extraordinaire, Monique Gore-Massy. #LADAorg #LupusChat
October 27, 2025 at 2:04 PM
Up early at #ACR25 sitting in on sessions about sexual & reproductive health and rheumatic conditions. Sessions are being led by Dr. Lisa Sammaritano, Dr. Jillian Rose, and Patient Advocate extraordinaire, Monique Gore-Massy. #LADAorg #LupusChat
Spending some time in the Poster Hall at #ACR25! I’m excited to see the results of several studies as well as the Patient Prospectives posters.
#LADAorg #LupusChat
@ladaorg.bsky.social
@lupuschat.bsky.social
#LADAorg #LupusChat
@ladaorg.bsky.social
@lupuschat.bsky.social
October 26, 2025 at 6:36 PM
Spending some time in the Poster Hall at #ACR25! I’m excited to see the results of several studies as well as the Patient Prospectives posters.
#LADAorg #LupusChat
@ladaorg.bsky.social
@lupuschat.bsky.social
#LADAorg #LupusChat
@ladaorg.bsky.social
@lupuschat.bsky.social
Representing @lupuschat.bsky.social at the lupus community booth at #ACR25 with @ladaorg.bsky.social! Stay tuned as I share updates on new and intriguing studies on lupus and rheumatic conditions!
Please visit our community booth in the Exhibit Hall at booth 2121! #LADAorg #LupusChat #ACR25
Please visit our community booth in the Exhibit Hall at booth 2121! #LADAorg #LupusChat #ACR25
October 26, 2025 at 5:19 PM
Representing @lupuschat.bsky.social at the lupus community booth at #ACR25 with @ladaorg.bsky.social! Stay tuned as I share updates on new and intriguing studies on lupus and rheumatic conditions!
Please visit our community booth in the Exhibit Hall at booth 2121! #LADAorg #LupusChat #ACR25
Please visit our community booth in the Exhibit Hall at booth 2121! #LADAorg #LupusChat #ACR25
I've flown w benlysta! Happy to give advice! #LupusChat
October 9, 2025 at 9:46 PM
I've flown w benlysta! Happy to give advice! #LupusChat
Need advice on #FlyingWithLupus, and if anyone has flown with benlysta and can give some advice, it would be appreciated. (Any first time flying advice is welcomed. #LupusChat
a woman in a white lace top has her eyes closed and says so many questions
ALT: a woman in a white lace top has her eyes closed and says so many questions
media.tenor.com
October 9, 2025 at 3:56 PM
Need advice on #FlyingWithLupus, and if anyone has flown with benlysta and can give some advice, it would be appreciated. (Any first time flying advice is welcomed. #LupusChat
Hey #LupusChat fam, please join us is wishing our Founder & CEO @tiffanyandlupus.bsky.social a very Happy Birthday!!! We are forever grateful for all you do for the community. You are a beacon of light and we appreciate you. We hope you have THE BEST day! 🎉🎂
August 28, 2025 at 2:15 PM
Hey #LupusChat fam, please join us is wishing our Founder & CEO @tiffanyandlupus.bsky.social a very Happy Birthday!!! We are forever grateful for all you do for the community. You are a beacon of light and we appreciate you. We hope you have THE BEST day! 🎉🎂
Me at the rheumatologist today... So... COVID vaccine?
Rheum: welp, either it'll be restricted and I will make sure you receive it due to being severely immunocompromised or we will get nothing. And we don't know yet... but def gonna need your flu shot.
#lupus #lupuschat
Rheum: welp, either it'll be restricted and I will make sure you receive it due to being severely immunocompromised or we will get nothing. And we don't know yet... but def gonna need your flu shot.
#lupus #lupuschat
August 27, 2025 at 10:27 PM
Me at the rheumatologist today... So... COVID vaccine?
Rheum: welp, either it'll be restricted and I will make sure you receive it due to being severely immunocompromised or we will get nothing. And we don't know yet... but def gonna need your flu shot.
#lupus #lupuschat
Rheum: welp, either it'll be restricted and I will make sure you receive it due to being severely immunocompromised or we will get nothing. And we don't know yet... but def gonna need your flu shot.
#lupus #lupuschat
🎂💜 Happy Birthday to our colleague & #LupusChat co-host @syncenerdcarly.bsky.social! 🥳 Thank you for advancing lupus research & always showing up for the community. We celebrate you today & every day! 🎉
a cartoon character from bob 's burgers is celebrating her birthday with her hands on her head .
Alt: a cartoon character from bob 's burgers is celebrating her birthday with her hands on her head .
media.tenor.com
August 25, 2025 at 4:26 PM
🎂💜 Happy Birthday to our colleague & #LupusChat co-host @syncenerdcarly.bsky.social! 🥳 Thank you for advancing lupus research & always showing up for the community. We celebrate you today & every day! 🎉
Got SLE? 💜 Been on a biologic?
You could earn $150 for sharing your experience in a 90-min online lupus research interview!
Ages 21–55, no Lupus Nephritis.
Apply by TODAY Aug 8 👉 shorturl.at/GfJk5 #LupusChat
You could earn $150 for sharing your experience in a 90-min online lupus research interview!
Ages 21–55, no Lupus Nephritis.
Apply by TODAY Aug 8 👉 shorturl.at/GfJk5 #LupusChat
August 4, 2025 at 7:12 PM
Got SLE? 💜 Been on a biologic?
You could earn $150 for sharing your experience in a 90-min online lupus research interview!
Ages 21–55, no Lupus Nephritis.
Apply by TODAY Aug 8 👉 shorturl.at/GfJk5 #LupusChat
You could earn $150 for sharing your experience in a 90-min online lupus research interview!
Ages 21–55, no Lupus Nephritis.
Apply by TODAY Aug 8 👉 shorturl.at/GfJk5 #LupusChat
Anyone using this SELF App to manage/track their disease activity? #LupusChat @lupuschat.bsky.social
www.lupus.org/resources/self
www.lupus.org/resources/self
SELF: Strategies to Embrace Living with Lupus Fearlessly
If you're living with lupus, our self-management app SELF is for you!
www.lupus.org
July 25, 2025 at 11:37 PM
Anyone using this SELF App to manage/track their disease activity? #LupusChat @lupuschat.bsky.social
www.lupus.org/resources/self
www.lupus.org/resources/self
Having the worse #lupus flare you've had in 10 years is terrifying. I'm still not coping well emotionally, but I didn't want to burden others, so I've been dealing with it as best as I can. No to mention everything else I deal with as a Black disabled woman. #LupusChat
a man says " it 's too much " in front of a window
ALT: a man says " it 's too much " in front of a window
media.tenor.com
July 7, 2025 at 6:23 PM
Having the worse #lupus flare you've had in 10 years is terrifying. I'm still not coping well emotionally, but I didn't want to burden others, so I've been dealing with it as best as I can. No to mention everything else I deal with as a Black disabled woman. #LupusChat
I had to take a break from discussing my #lupus cuz it's causing debilitating anxiety due to a flare; to the point I just got my labs that were ordered in April by my rheumy and got my August labs from endocrinologist with them because I don't know when I can make myself do them again. #lupuschat
a black and white photo of a woman with her hands on her head and the words `` anxiety setting in ... '' .
ALT: a black and white photo of a woman with her hands on her head and the words `` anxiety setting in ... '' .
media.tenor.com
July 7, 2025 at 6:23 PM
I had to take a break from discussing my #lupus cuz it's causing debilitating anxiety due to a flare; to the point I just got my labs that were ordered in April by my rheumy and got my August labs from endocrinologist with them because I don't know when I can make myself do them again. #lupuschat
It’s not just the immune mediated and infections - we need to pay attention to cardiovascular disease in SLE
pubmed.ncbi.nlm.nih.gov/40539000/
Nice job synthesizing the data @saynanorouzi.bsky.social and team!
#NephSky #lupuschat
pubmed.ncbi.nlm.nih.gov/40539000/
Nice job synthesizing the data @saynanorouzi.bsky.social and team!
#NephSky #lupuschat
Cardiovascular Events in Lupus Nephritis: A Systematic Review and Meta-Analysis - PubMed
CVE occurrence among individuals with LN is significant, and this disease entity increases CVE risk, highlighting the importance of implementing early therapeutic interventions to prevent poor outcome...
pubmed.ncbi.nlm.nih.gov
June 21, 2025 at 2:27 PM
It’s not just the immune mediated and infections - we need to pay attention to cardiovascular disease in SLE
pubmed.ncbi.nlm.nih.gov/40539000/
Nice job synthesizing the data @saynanorouzi.bsky.social and team!
#NephSky #lupuschat
pubmed.ncbi.nlm.nih.gov/40539000/
Nice job synthesizing the data @saynanorouzi.bsky.social and team!
#NephSky #lupuschat
Please join us in celebrating all the wonderful Dads and Father figures in our community and across the world. Happy Father's Day to you all!!
~The #LupusChat Team 💜
~The #LupusChat Team 💜
June 15, 2025 at 8:31 PM
Please join us in celebrating all the wonderful Dads and Father figures in our community and across the world. Happy Father's Day to you all!!
~The #LupusChat Team 💜
~The #LupusChat Team 💜
Superb dialogue at #EULAR25.
Thank you @georgearobinson.bsky.social for your posts here! You rock. 🤘🏽
#LupusAwareness #LupusChat #MedSky
Thank you @georgearobinson.bsky.social for your posts here! You rock. 🤘🏽
#LupusAwareness #LupusChat #MedSky
Inspiring talk from the amazing Jess Manson! 🙌
@jury-lab.bsky.social
@jury-lab.bsky.social
June 14, 2025 at 11:27 AM
Superb dialogue at #EULAR25.
Thank you @georgearobinson.bsky.social for your posts here! You rock. 🤘🏽
#LupusAwareness #LupusChat #MedSky
Thank you @georgearobinson.bsky.social for your posts here! You rock. 🤘🏽
#LupusAwareness #LupusChat #MedSky