Posts Tagged ‘Crises and Pain’
Research shows Emergency Care often not Ideal for Sickle Cell Patients
New survey finds that treatment in the emergency room for patients with sickle cell disease is not ideal. This is a longstanding issue, but warriors now demand justice. It will be addressed by #BlackHealthMatters initiative
Read MoreNew Survey Finds Emergency Care is Not Ideal for SC Patients
Most people with sickle cell disease (SCD) in the U.S. are satisfied with their primary care practitioners, but less so with emergency care given at a hospital to manage severe pain, according to a survey of more than 400 teenage and adult patients. How a person expects to be treated weighs on decisions to access care, responses…
Read MoreSCW Video: Hallucinations and Sickle Cell
Have you ever had a crazy dream or hallucination while on pain meds? Sometimes our brain creates these alternate realities as an escape because the sickle cell pain is so unbearable in our current state. Has this ever happened to you? Share your story with us!
Read MoreVOICE Crisis Alert App
VOICE Crisis Alert App The VOICE Crisis Alert app is the first national app created for patients and families with sickle cell disease. The app stores all its data locally on your phone, so it’s private. In addition to being a crisis pain tracker tool storable for 90 days with an in-app pain diary to…
Read MorePublic Meeting for Patient-Focused Drug Development on Chronic Pain
Public Meeting for Patient-Focused Drug Development on Chronic Pain Meeting Information On July 9, 2018, the FDA is hosting a public meeting for people with pain. Therefore, the FDA wants to hear how people deal with chronic pain, how they feel about treatment approaches, and problems they have accessing treatments. Above all, they want to…
Read MoreHow Do You Still Believe in a Loving God?
Ever wondered why God allows you to have sickle cell pain? Well you are not alone.
Read MoreRainy Lake Medical Center, International Falls, MN – Negative Review
Hello everyone, Patients all over the world struggling with sickle cell disease often go to the hospital when they are in a crisis and receive poor medical care from healthcare workers who have little to no knowledge of SCD. This has got to stop. In this section, we will be featuring real stories from sickle…
Read MoreSickle Cell and Endari
**Due to a production issue Endari is not currently available, but as soon as becomes available we will post it up on the website. Hello everyone, great news! Endari is available as of December 17. Endari is a concentrated form of L-Glutamine. Its formuls is for sickle cell disease. When taken as directed, it has…
Read MoreAvascular Necrosis, Hip Replacements and Sickle Cell
What to do with AVN when you are young? See the message below! One and a half years ago I had a hip replacement and I am young (in my early 20s). I had AVN in my left hip which progressively got worse over the course of 8 years to the point where I could…
Read MoreTips to Prevent Sickle Cell Crisis in the Summer
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