🎉 Happy #WorldLupusDay! Today is all about spreading #LupusAwareness. Thank you to every organization, advocate, caregiver, and supporter working daily to educate the masses about the effects of #Lupus. Let's continue working together to champion the Patient voice.💜 #LupusChat

Hi! I’m Tiffany, your #LupusChat co-host from New York City. I’m so excited about the discussion we have planned for #LupusAwarenessMonth! My favorite spring foods are strawberries & cherry plums. So glad they’re in season right now!

ID: two red plums put on top of a phone

Hi gang I am in hospital visiting my grandmom! Sending my love !! Will try to pop in if I can #LupusChat

Save the date! On May 4th join us here at #LupusChat at 3 PM ET as we kick off #LupusAwarenessMonth with a powerful discussion exploring what #LupusFeelsLike. Together, we’ll share our experiences and paint a clearer picture of the mental, physical, and emotional impacts of life with Lupus. 💜✨

I will be driving so I will miss the chat this week! Sending warm wishes and will catch you later !

Our next #LupusChat will be Sunday, March 23, 2025 at 3PM Eastern Time. Stay tuned for our upcoming topic announcement and remember to mark your calendars to save the date!

Our next #LupusChat will be Sunday, March 23, 2025, at 3PM Eastern Time. Stay tuned for our upcoming topic announcement and remember to mark your calendars to save the date!

A6: it depends on the purpose of the visit and the doctor. I’ve been left flustered and upset but there’s been other times where I got what I needed out of visit. Preparing before visit is important . #LupusChat

A5: I start by asking about side effects !! Aka my biggest concern. I also ask if it’s ok to stop suddenly or does it need to be tapered down. Sometimes I ask for a print out with more info to read later before I make a decision. I often ask for written instructions in visit summary too. #LupusChat

A4: I mostly communicate with my care team through MyChart messages unless it’s urgent. Then via phone. #LupusChat

A3: I get labs pretty much in line with doc visits so every 3-6 months. I get notifications when results are in and can view them on labcorp app or MyChart. My docs usually leave notes with the results on MyChart or if I get them done in advance we discuss at appointment. #LupusChat

An excellent list !! #LupusChat

A2: I have to bring notes about med changes, how treatments are going, new symptoms, any questions, requests for referrals. Writing things down helps. #LupusChat

A1 Miah has an upcoming appointment in March with her pediatric Rheumatologist.
A challenge.... I think might be remembering to go for blood-work before the appointment.
#LupusChat

Ah yes ! You’re right! I always forget to get my bloodwork before my appointment! #LupusChat

A1: it changes depending on where my health is but rheum every 3-6 months, neurology every 3 months, psych every 2-5 months. Eye doc every year which um is way past due. The rest as needed. I share a car so scheduling is my biggest challenge. And being mentally prepared lol. #LupusChat

Hiii everyone. My name is Christèle, I am one of your #LupusChat co-hosts, and I've had lupus for 18 years. If I could teleport I would be somewhere warm and sunny right now. Prob on a gorgeous Caribbean beach with some snacks and a good book.

Hello! I’m Tiffany, your #LupusChat Co-host from NYC. I’m a patient advocate who is passionate about health advocacy. If I could teleport to anywhere in the world, I would choose the sandy beaches of St. John in the US Virgin Islands. Their ocean waters would heal me!

Hi I’m Bella from NJ. Diagnosed with lupus in 2016. I would definitely teleport to a warm beach. #LupusChat

Our next #LupusChat will be Sunday March 9, 2025 at 3PM Eastern Time. Stay tuned for our upcoming topic announcement and remember to mark your calendars to save the date!

Our next #LupusChat will be Sunday March 9, 2025 at 3PM Eastern Time. Stay tuned for our upcoming topic announcement and remember to mark your calendars to save the date!

A5: my docs usually do quick review of each others notes at the start of appointments. If we are considering a new treatment, sometimes I ask or they suggest emailing one another before we green light it.
#LupusChat

A4: Advocating for yourself is tough when a doctor isn’t listening, downplays your experience, or makes you second-guess yourself with gaslighting. When that happens, I trust my gut, cut my losses, and start searching for a specialist who will truly hear me. My health is worth it! #LupusChat

A4: I try my best to prepare for every medical appointment with notes on how my health has been in between visits, any concerns or questions I may have, things I may want to try or referrals I may need to see a new specialist. Doing this before each visit helps me to be my best advocate. #LupusChat

A3. I also appreciate a specialist who indulges my curiosity. I have questions about treatments/procedures/etc and I and to fully discuss them. #LupusChat

A4: I advocate for myself by going thru past treatments - what has worked and hasn’t. Explaining how symptoms or treatments affect my life. Asking for alternatives. If something doesn’t line up , I try to gather courage to explain why and what I need instead. #LupusChat

A2. It really puts me at ease that my specialists know each other and work together. It's truly a TEAM effort. #LupusChat

A3: When it comes to my doctors, I want someone kind and empathetic who listens and welcomes me as an active decision-maker when designing my treatment plan. I need them to be honest and have the courage to say “I don’t know, but let’s find someone who does.” #LupusChat

A3: I look for a doctor who is kind, honest, and patient. I want someone who cares. And ideal doctor’s appointment has clear communication, time for questions, clearly written notes/directions on next steps. #LupusChat

A2: I have to ensure that new providers understand the dynamic of how my care is managed and know their place on the team. They must work well with others and also understand that I run point and we don’t move/treat without MY green light. I have to review all data and facts first. #LupusChat

A2: I try to schedule docs within same hospital network to make communication easier. I also want them to be somewhat educated about lupus and how it relates to their own speciality. And it’s important that they listen to me and treat me with respect. #LupusChat

Hi..
I'm Elizabeth from NJ and a #LupusChat co-host
My connection to Lupus is through my daughter Miah
GIF 🤔