Top Tweets for #SCDPatients
Kudos Hon. Health Minister @dineshgrao 4 his unwavering commitment 2 public health particularly #SickleCellMission
This certainly benefits #SCDpatients in receiving proper care+govt benefits
Inspiring Progress @CTRITH_Kar
#Chamarajanagar #PublicPolicyEngagement
@India_Alliance
1/7: our Co-PI @DeepaBhat29 and our community engagement team at @CTRITH_Kar recently facilitated a discussion between #sicklecell patients from #Chamarajanagar and the honorable Health Minister, @dineshgrao, during his recent visit to #Chamarajanagar district.
This was & STILL is such an amazing Honor! Wish we'd been able to meet the other Warriors during, but visiting L.A., hanging out w/Kevin & my BFF, was the BEST! I have to say, Team @bluebirdbio, were Extra kind, caring, supportive & attentive to us & our needs as #SCDpatients!✨
As #SickleCellAwarenessMonth comes to a close, we're revisiting this moment in 2020 when TWO of our Board Members became a part of the @bluebirdbio's #BeTheSpark! We're proud to have 2 powerhouse #sicklecell warriors & international #SCDAdvocates on our Board! #sicklecellmidwest
@ERNEuroBloodNet @beneitez_david @SCCConsortium @CayenneWellness @EU_HaDEA @EU_Commission @ULBruxelles @MariangelaPell4 @mmanupe @Maria_RodriSan @FenauxP @CCBD_VHResearch Our part to #SickleCellDay2023, for #SCDpatients . Stronger together @AsafeFalciforme @donarsang @SJDbarcelona_es @ERNEuroBloodNet !!!!!
SUPER Thankful a #SCWarrior just asked about curative therapies for older patients! So many #clinicaltrials for curative therapies exclude #SCDpatients who are over 40 & up. We are living longer w/#sicklecell & ALL these companies working on #SCDTherapies need to recognize that!
It was really great to discuss the importance of #sicklecell trait testing, @sicklecellmw & what we do for the #sccommunity, the stigma and discrimination of #SCDpatients in the ER, #sicklecelldisease and why we call ourselves #SCWARRIORS & why "sickler" is derogatory & a NO NO.
We enjoyed our chat on @kkfi901fm's Urban Connections with Host Donna Wolfe and Co-Host Karen E. Griffin! Thank You for inviting us to discuss our advocacy as @sicklecellmw board members, #SCWarriors/Advocates & to educate the public on #sicklecell & #sctrait.
#SickleCellMidwest
Can Apple Watch⌚ Predict #SickleCell Pain?
Researchers argue that its unique data collection & machine learning capabilities could be used to help predict #VOCs, allowing #SCDpatients to receive treatment before severe #pain sets in
https://t.co/el21Lk5tSJ
via @_MyHealthyApple
Racial discrimination against #SCDpatients a huge factor in Europe. We call upon all gov't healthcare agencies to #eliminate ongoing #unfair treatment of patients & lack of improved, accessible, equitable, services for Sickle Cell Disease in Europe 🇪🇺
https://t.co/CdDqUtke6F
@GhanaboyPharmd goes over the different pain guidelines, APS, NHLBI, etc, & the importance of NOT treating #SCDpatients like drug seekers, listening to patients when they say, this certain thing is what works best for me, the patient is the Expert! #TwitterRx #MedTwitter
#SickleCell DYK? #SCDpatients face many #disparities. We may have to wait up to 50% longer for care in the #ED compared to others, even after accounting for #race. All while #sicklecell continues to inflict severe #pain & #silentdamage, on our bodies.
#SickleCellAwarenessMonth
#SickleCell Drs like this, a Dr who truly cares about #SCDpatients & actively practices what she preaches & educates us All, #MedProfessionals who Fight 4 us like @DrPowerHays, @GhanaboyPharmd, are what we greatly NEED More of!
#MedEd
#WordsMatter
#SickleCellMatters
#SCDWarriors
This is infuriating to anyone who cares for #sicklecellwarriors
Im curious how many of us would say anything to this doctor
If so, what? How? When?
Excited to talk w/ @CincyPedsRes tomorrow practicing speaking up for our pts and ourselves #meded #wordsmatter #sicklecellmatters
@CandiKingForHD2 Good! So many of us have & have had, the same anguish as Kameisha when it is/was time to transition to adult #sicklecellcare, because it's difficult to find #Hematologists or any Providers, and above average, #SCD knowledgeable providers at that, willing to take on #SCDpatients.
@biba_tinga, Miriam Santos Freire & Naomi Awoliyi, #sicklecelldisease Patients Representatives, presented the outcomes of the 4 sessions of the @ERNEuroBloodNet&ASCAT #SCDPatients Educational Session in front of the plenary of @ascatconference. Great debate with @PdbInusa! #ERNeu
📢Prof. Marco Zecca explained to participants of the @ERNEuroBloodNet & @ascatconference #SCDPatients Educational Session the Allogeneic haematopoietic stem cell transplantation procedure. Such an informative lecture!#ERNeu #SickleCellDisease
Luce Kuseke Sona had a bone marrow transplant in 2013 in Paris at the age of 29 & she is talking to us about her journey with sickle cell disease & her recovery. Such an inspirational speech at the @ERNEuroBloodNet & @ascatconference #SCDPatients Educational Session. #ERNeu #SCD
📢Prof @ntim_oteng had a speech on "What patient’s should know when planning a family" at the @ERNEuroBloodNet & @ascatconference #SCDPatients Educational Session. So important the collaboration among Obstreticians and hematologists! #ERNeu #SickleCellDisease #SCD
Dr L Joseph focused on recent unpublished data’s of French pregnancies register (2013-2019) at the
@ERNEuroBloodNet& @ascatconference
#SCDPatients Educational Session & underlined the importance of the dialogue among physicians and patients during the motherhood journey. #ERNeu
📢Yesterday at the @ERNEuroBloodNet& @ascatconference #SCDPatients Educational Session, Eda Ömür a dedicated #SickleCell patient advocate from Netherland, had an informative speech about her experience of pregnancy, being an inspiration for every people looking for a baby. #ERNeu
@biba_tinga and Decio Temporario, SCD Patients Representative talked about mental health from caregiver&patient point of view: the journey of being a mum of a #SCD child, the approach to pain&drugs at the @ERNEuroBloodNet& @ascatconference #SCDPatients Educational Session. #ERNeu
📢Dr Gabriela Medin & Dr Adrienne Lerner talked about the challenge of living (and growing up) with #SCD from a psychological point of view in all the life’s phases at the #mentalhealth session of the @ERNEuroBloodNet& @ascatconference #SCDPatients Educational Session.
#ERNeu
📢With @noemibaroy and audience of the @ERNEuroBloodNet& @ascatconference #SCDPatients Educational Session, we talked about how race and racism impacts the quality of care in the #SCD community and how we can change things for the better! #ERNeu #SickleCellDisease
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