#LupusChat

Headshot of Tiffany, with a green afroprint outfit, with pink glasses, hair out in a curly twist out.

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! 🎉🎂

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 .

🎂💜 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 👉 https://shorturl.at/GfJk5

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

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 💜

Michael #Highlights #LupusGPT developed by @lupuseurope.bsky.social, a new AI tool aimed for patients, who just won the PFMD “Made with Patients” award. Congratulations! 🥳
Find it here: lupusgpt.org

✅ Meaningful patient collaboration X GenAI = real impact

Congratulations to #LupusGPT on winning the #MadeWithPatients Award 🏆 at #EULAR25

🔊LISTEN IN 👇🏽

@lupuseurope.bsky.social @lupuschat.bsky.social @lupusdnadoc.bsky.social @lupuswarrior69.bsky.social @lupus.org @disorderlupus.bsky.social

We need cross-sector collaborations, public-private partnerships and robust basic, clinical and translational projects to identify biomarkers, better clinical trial methodologies, prevent complications, develop better dx measures and safer, more effective treatments, and cures.

We need crosssector collaborations, public-private partnerships and robust basic, clinical and translational projects to identify biomarkers, better clinical trial methodologies, prevent complications, develop better dx measures and safer, >effective #lupus drugs and cures. @lupuschat.bsky.social

Thrilled to have the opportunity to present our early research on identifying stereotypes for patients with SLE at #LUPUS2025 in Toronto. Leaving inspired and grateful for this outstanding community of scientists, clinicians, and patient partners.

Adding some of my favorite slides … #LUPUS2025
Many excellent sessions and abstracts, especially appreciated the multiple sessions on CNS lupus and cognitive impairment - an area of importance for patients with lupus.

A6: I'm more solo independent and don't rely on others very much. BUT I'm an expert at navigating the US medical beast that is Healthcare and insurance ;) #LupusChat

A5: oof... I dunno... Lupus kind of taught me that most of the people around me were lacking in any empathy. Being neurospicy I always had issues with relationships anyhow. 🙃

#LupusChat

While some drugs provide benefits to people with #lupus, significant side effects exist and can cause an increase in infections, cancer, significant bone loss and osteoporosis, sterility, and stroke among many other adverse health consequences. We need an arsenal of new drugs! @lupuschat.bsky.social

A4: I am a fierce advocate of myself. ❤️ #lupuschat

A6. So I decided to have ‪‪@tinarsjn.bsky.social‬ answer this. We've been friends for a gazillion years and have been roommates for a while lol. She says that living with someone who has lupus has shaped her interactions with people. #LupusChat

A6: #LupusTaughtMe to move through the world more intentionally. I plan ahead, protect my energy, and no longer feel guilty for resting. It’s also taught me how to pass my strength along—to use what I’ve learned to empower and uplift others on their journey too. #LupusChat

A6: #LupusMeEnseño para moverse por el mundo más intencionalmente. Planeo con anticipación, protejo mi energía, y no me siento culpable por descansar. También me enseñó cómo compartir mi fuerza y usar lo que he aprendido para empoderar y elevar a otros en su viaje. #LupusChat

A3: lupus has taught me to pay more attention to my body. Not to dismiss even small things that may pop up. #LupusChat

Disfrute del resto de su día & acuérdese de practicar el cuidado de sí mismo hoy porque además #LupusChat también es #SelfcareSunday!

Enjoy the rest of your day & remember to practice a little (or a lot) self-care today because besides #LupusChat it's also #SelfcareSunday!

El hashtag LupusMeEnseño debajo del logo #LupusChat sobre un fondo colorido

Mantén viva la conversación usando la etiqueta #LupusMeEnseño para compartir tus experiencias personales, grandes o pequeñas. Tu historia podría ser la que alguien más necesita ver para sentirse menos solo o más comprendido. Cada voz ayuda a crear conciencia y comunidad. 💜#LupusChat

The hashtag LupusTaughtMe under the #LupusChat logo against a colorful background

Keep the conversation going by using the #LupusTaughtMe hashtag to share your personal experiences, big or small. Your story might be the one someone else needs to see to feel less alone or more understood. Every voice helps build awareness and community. 💜#LupusChat

Thank you for sharing your stories, strength, and honesty in today’s #LupusTaughtMe discussion. Your voices help others feel seen, understood, and less alone on this journey. 💜 #LupusChat

Gracias por compartir sus historias, fortaleza y honestidad en la charla de hoy #LupusMeEnseño. Sus voces ayudan a otros a sentirse vistos, comprendidos y menos solos en este camino. 💜 #LupusChat

A5: El lupus me enseñó que las amistades reales no se desvanecen cuando las cosas se ponen difíciles. Los verdaderos se quedan, hacen preguntas y hacen espacio para mis límites. He aprendido que perder a personas que no respetan mi realidad no es realmente una pérdida. #LupusChat

A5: Lupus taught me that real friendships don’t fade when things get hard. The true ones stuck around, asked questions, and made space for my limits. And as for the “thank u, next” kind, I’ve learned that losing people who don’t respect my reality isn’t really a loss. #LupusChat

A5. I learned to discern who I can trust to understand how complicated my life is but still want to be here anyway. #LupusChat

A5: Aprendí que no todos tienen la capacidad de ser el amigo que necesitas. Es importante tener diferentes personas para diferentes cosas. Y está bien eliminar a personas de tu vida. #LupusChat

A5: I learned that not everyone has the capacity to be the friend you need. It’s important to have different people for different things. And it’s ok to remove people from your life. #LupusChat

Q6: How has living with lupus shaped the way you move through the world today? Use #LupusTaughtMe to shout out the lessons, shifts, and strength you've gained along the way. #LupusChat

Q6: How has living with lupus shaped the way you move through the world today? Use #LupusTaughtMe to shout out the lessons, shifts, and strength you've gained along the way. #LupusChat