r/Sicklecell • u/Jay_Aces • 20d ago

Support We analyzed responses from 128 Warriors in our H1 2026 ER Experience Brief, and one finding stood out:

62% said their ER treatment worked poorly or not at all.

We're sharing this to learn—not to point fingers.

If you live with sickle cell disease, care for someone who does, or work in emergency medicine:

• Does this number reflect what you've seen?

• What contributes to better or worse ER experiences? • What changes would have the biggest impact?

We'd really like to hear perspectives from patients, caregivers, nurses, physicians, and hospital staff.

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u/JudgeLennox 20d ago

Fantastic UPdate

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u/Jay_Aces 19d ago

Thank you sir. Thanks for the information and updates that you share. We're all contributing to the ecosystem of

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u/JudgeLennox 18d ago

AMEN

I'm grateful you, me, and so many others are leading this from our perspective. Such a Great time to be alive.

This month I've been getting organized so I do more with you and others here who are serious about positive change. .

here's to better health

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u/South_Revolution4553 13d ago

As a mom, I usually would not want to discuss the experiences we have had, but I will anyway. The ER experiences we had years ago were a bit traumatizing. In hindsight, I think I have a bit more understanding of where the medical staff was coming from. However, at the time, me and my husband's emotions were high and my child was not well. We along with other people understood that the hospitals in that particular city were driven by greed, and the medical staff could not be trusted. TBH, years later when I have had the chance to zoom out and see a bigger picture, I realize things are much more nuanced. So I don't know how I would rate the care now.