Top Tweets for #SCDPain
What concerns me is the age of the #sicklecell patients undergoing #genetherapy. I haven't seen anyone past 35, 40 & up. Is it about age or the damage of #scd? How can we put a limit on who gets to Finally live a life w/o excruciating, unrelenting, #SCDpain?#sicklecelllifeofmemej
People with sickle cell may finally be able to live without the damage the disease causes. Two companies are seeking FDA approval for therapies that may amount to a cure. But the decision to take the drug β should it become available β is not so simple. https://t.co/pvJgsiFIYP
I try to use everything possible for #sicklecell and #chronicpain, #painmanagement. Mostly I rely on my heating pad, but I use topical creams, like Aboniki Balm, Lidocaine Cream, Don't use topical creams WITH a heating pad btw! I also use OTC lidocaine back patches for #SCDpain.
Warriors the next session starts in 15 minutes and this conversation is all about pain management. Our community is large, and we know everyone may have various methods to alleviate pain. We encourage our community to share pain management strategies that have worked for YOU.
I'm interested in edibles, sodas, lollipops, tinctures & that's it. Maybe topicals. Of course tinctures are more expensive. Gonna ask a friend 4 recommendations. Tinctures would be nice 2 have 4 bad breakthru #SCDPain. It happens w/ hot weather like thisπ¬
#SickleCellLifeOfMemej
#SCDDrs & #SCDResearchers! What research has been done on #SCDWarriors into their 60's & their #QOL, in relation to #SCDPain, #Fatigue & just overall #SickleCellHealth & Wellness?
@jkw4444
@PTMcGann
@acweyand
@DrTitiFasipe
@akshatdoctor
@ASHCollab
@SickCells
@ASH_hematology
@SickleSurvivor Sometimes we just do it bc we've been doing it for so long & we know how much we & our bodies can take. Or think we do!Unfortunately we still have day 2 day to get thru, so we do what needs 2 be done. I wish others understood how truly horrendously excruciating #SCDPain is tho.
Things like this, or I should say, #biases like these, are just some of the main reasons why so many of my fellow #SickleCellWarriors are extremely hesitant to go to the hospital and/or ER for our #sicklecellcrises & any other #SCDPain or SCD related complications we may have.π‘
#CommunityCheckIn was really cathartic 4 me. Besides the #neurology exam #pain & #SCDpain, this has been a HARD, stressful wk 4 me for other reasons only a few close friends know. And my #SCSupport was right there 4 me, supporting me as I opened up 2 them
#SickleCellLifeOfMemej
@tal7291 @lockedoutofvenu FACT my you know what! 3days really?? I was in the hospital for a month long #SickleCellCrisis with daily #SCDpain and yet here I am,16 years later and I've Never been addicted to opioids. We don't need the bs just so you can deny appropriate, necessary, immediate #paintreatment.
@myzen11 @GhanaboyPharmd I really hope & pray that some of the patients have much better outcomes with the treatments though. After going through years of Hell with #SCDPain & then getting the #Hope of a curative treatment, they really deserve to have something good, well Great, come from it.π€πΏππΏ
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