Top Tweets for #PainCrises

almost 4 years ago

@GhanaboyPharmd Well you already know how many of us #scd patients are treated when asking for what we KNOW are proven meds to work for our #paincrises. Even go as far as disbelieving our pain, regardless of care plan and/or prior history. I agree, it makes no sense. You know this more than most

0

2

0

about 4 years ago

Once again my #hematologists have left me without pain medicine, this time for this weekend. And it's a holiday weekend. I'm not even sure how to feel about this stuff anymore. #sicklecell #pain #redbloodcells #mybloodhurts #medicine #crisis #paincrises #writingaletternow

7

0

about 4 years ago

Ugh, I had a crisis earlier 2day. Yeah again. Having 3 #paincrises within 5 wks is NOT me. This time it was my fault tho, which is yet another reason I hate taking scheduled meds.😮‍💨 Even being 30mins late can cause hell..& it did #SickleCellLifeOfMemej #SickleCellAnemiaFighter

4

13

4

0

over 4 years ago

Now we have Dr. Sumain Jain from India presenting on the 1st part of the 3 part panel, “Experiences of People #LivingWithSCD”. She discusses the progress of her #sicklecell patients in #India since being on #Hydroxyurea. @globalscdorgs #GASCDO #SickleCell #PainCrises

0

3

0

Matt Hazell @MattHazellRCI

over 4 years ago

I accidentally rebooted my phone & forgot about apps. My bad. Got out the hsptl on Thursday. 6 days. Pretty much my average. For each day in the hospital, you need one week to recover. So basically, I need 6 weeks to recover #sicklecell #paincrises #giveme1week #stillinpain

0

over 4 years ago

@redcellsara @RedCellsrus @uclh Fantastic idea!!! I was #shocked reading a recent ED experience of a #SickleCellPatient and how they avoid attendance because of a perception they are an addict, when in fact in severe #PainCrises. Hopefully patients being involved in design will #BreakDownBarriers

0

1

0

about 5 years ago

@Purrfectly_Rare Thanks @Purrfectly_Rare! I felt the same, I teared up too. For those who don't have #SCD, this is a REAL representation of what we go thru, featuring the true story of #SickleCellWarrior, Phil Okwo. In SCD, #VOCs/#PainCrises are the main cause of ER visits and hospital admissions

0

2

0

about 5 years ago

Since we've been discussing #SickleCellDisease & #EDCare, Here's a #SCDFact about #VOC's/#PainCrises VOCs are the reason for >70% of #ER visits for adults with #SCD, despite the majority being managed @ home. https://t.co/oTSmMLX5Xj #VasoOcclusiveCrises #SickleCellLifeOfMemej

1

7

2

0

about 5 years ago

#Vasoocclusivecrises are a group of #acute complications that include #paincrises, #acutechestsyndrome or #acs, #stroke, and problems with the #spleen. 1/2 #SickleCellCrises #SickleCellAwarenessMonth

1

5

2

0

about 5 years ago

#Paincrises, aka a #SickleCellCrisis, are unpredictable & EXTREMELY #Painful, lastining anywhere from a few hrs to a few wks & are the most common reason for hospitalization. My longest stay was 30 days. https://t.co/nm9yxN3fn1 #SickleCellAwarenessMonth #SickleCellLifeOfMemej

1

8

4

0

Raremark Foundation

@RaremarkFdn

about 5 years ago

What causes #paincrises in sickle cell disease? Sickle cell disease goes beyond red blood cells. The disease has an often silent, ongoing effect on blood vessels and other blood cells, too, such as white blood cells and platelets. We highlight them below 🧵

1

3

4

0

over 5 years ago

Wow, what an eye-opening piece of #SickleCellData courtesy of @SickCells. 75% of Adults w/#SickleCellDisease who have #SickleCell #PainCrises CANNOT get #access to #Hydroxyurea. That MUST change. 75% is Far too many #SickleCellWarriors that could GREATLY benefit from #Hydroxyurea

Sick Cells @SickCells

over 5 years ago

People w/ SCD still struggle to get proper access to & coverage of basic SCD treatments like Hydroxyurea. We continue to advocate with our Ambassadors for better access & coverage @ P&T and DURB meetings across the country to show that SCD is different for every warrior. Join us!

SickCells's tweet photo. People w/ SCD still struggle to get proper access to & coverage of basic SCD treatments like Hydroxyurea. We continue to advocate with our Ambassadors for better access & coverage @ P&T and DURB meetings across the country to show that SCD is different for every warrior. Join us! https://t.co/XFpR3Geg7h

2

31

21

0

6

5

0

over 5 years ago

This doctor just offered me 1mg of dilaudid every 4 hours?? Wtf I'm supposed to do with that? She might as well give me some tic tacs. Why am I even here? I should have left after the ER. #SickleCell #paincrises #infection #chronicfatigue

3

0

over 5 years ago

@RoseCottageCre1 We're in a #paincrises. People are trying to gaslight us into believing it's all in our minds. #paincarecrises

0

5

0

#triggers #sicklecell #paincrises #pain

almost 6 years ago

Warriors Rock @scwarriorsrock

almost 6 years ago

Triggers of sickle cell pain crisis. • @xx_queenbee__ ::::::::::::::::::::::: #WarriorsRock #PaFèSilans #AnemiFalsifom #DonateBlood #BreakTheSilence #IAmAWarrior #SickleCellAnemia #KnockOutSickleCell #SickleCellWarrior #IAmSickleCellStrong

1

7

5

0

4

2

0

Gautam Dongre NASCO @Gautam_N_Dongre

about 6 years ago

#painofsicklecell & #paincrises may damage your organs but.....not to your determination✈️

1

8

1

0

over 6 years ago

@BevOberlander @ravensspirit68 Thank you Bev. This is so true. There are many in pain that are reading not commenting. I believe they draw strength from Arianne, knowing they're not alone during this #PainCrises

0

2

0

over 6 years ago

@h3x_mat3 @ravensspirit68 We are in this together. Every voice counts. Many are suffering from pain, unmedicated, yet continue to make a difference in our community. Arianne reminds me how far from normal we've strayed; from patient centered care to none. #PainCrises

0

1

0