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"What do I have to lose?"

That's the question so many of us with Sjögren's ask when considering a clinical trial. In a special, candid roundtable from the Virtual Sjögren's Summit, I sat down with fellow patient and trial participant, Janet Steins, to pull back the curtain on what that experience is really like.

Janet shares her incredible story—from the frustrating hurdles of getting enrolled (and how her doctor fought for her!) to the absolutely jaw-dropping moment after her first infusion when she realized... "I have saliva. I can spit."

This is an unscripted, honest conversation about the entire process, beyond the scientific papers and press releases.

In this video, you'll hear about:
✅ The REAL time commitment and logistics of monthly infusions.
✅ Our surprising and hopeful results (improved saliva, energy, and more).
✅ Navigating the uncertainty of a double-blind, placebo-controlled trial.
✅ A heartfelt message for anyone considering joining a clinical trial.

This is a conversation about hope, advocacy, and the power of patients contributing to the future of Sjögren's treatment.

➡️ Click the link in my bio to watch the full, unscripted conversation now!

➡️ Want more? Get lifetime access to the Sjogren's Summit 4-Year Library! (Link in Bio)

➡️ Ready for personalized care? Check out our new patient packages with enhanced support! (Link in Bio)
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#Sjogrens #ClinicalTrial #PatientPerspective #Dazodalibep #Nipocalimab #Autoimmune #Hope #PatientAdvocacy #DrKaraWada #ImmuneConfident #SjogrensSummit
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Views : 97
Genre: Education
License: Standard YouTube License

Uploaded At 1 month ago ^^
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RYD date created : 2025-09-03T18:14:18.274375Z
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3 Comments

Top Comments of this video!! :3

@colhard21

1 month ago

So which trial is she in? I'm in the Daz trial. For newbies would be interesting to see what factors should be looked at to choose which trial? I feel the same way as her, even if it doesn't help me maybe it will help others.

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@debbieschultz106

1 month ago

I can't even see a rheumatologist because I'm only positive on the B and negative on A. They told me I might have Sicca. 3 blood tests just positive on sjogrens B. I'm fighting thrush all the time. I'm always on diflucan. Who is out there that can help me? I live in Midwestern illinois.

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@lumbeejojo

1 month ago

❤I have SJOGREN'S!!

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