Discover and read the best of Twitter Threads about #sicklecell

Most recents (24)

Wonderful to have our work on using genome editing in single cells to better understand hemoglobin switching published in @NatureComms today. Terrific work by Yong Shen, @JeffreyVerboon, and colleagues from the @JianXuLab and Orkin labs: go.nature.com/3k3OanG
👇Short thread
13 years ago, we had identified BCL11A as a key regulator of fetal hemoglobin (HbF) expression: science.sciencemag.org/content/322/59…

But how was it acting to silence HbF? (1/n)
10 years ago we characterized a number of HPFH and delta-beta-thalassemia deletions and showed that there may be roles for long-range elements in the silencing of HbF: nejm.org/doi/full/10.10…

But definitive perturbations were not done then (2/n)
Read 15 tweets
I am perplexed how #RogerChou can not only sit on the #CDCOWG but is a lead author. He recused himself at the #CDC meeting due to #COIs bc of his work as ‘expert witness’ in Purdue litigation but is lead author 🤷🏻‍♀️ @CDCDirector @CDCInjury could you explain how this is ethical? 1/
Listening to the #CDCOWG from perspective of #caregiver & advocate was disheartening. For me @CDCDirector assurances that #patients voices were heard was meaningless. She may say that we’ve been heard but then how are so many feeling as we haven’t been? Why are the #legislation 2
of these guidelines continuing? Why are those who have benefitted from #opioid #pain medications being removed, shamed & stigmatized? Why is care not individualized? It’s very clear our #voices have not been heard. There is nothing that was said that eased my concern for 3/
Read 19 tweets
I just want to scream as loud as I can, then cry into my pillow. I’m trying to find a new #SickleCell doctor, but the program I want to go to isn’t accepting new patients.
I don’t feel comfortable enough to go to a private practice so I’m doing the intake for the SCD program at the main campus of the same medical network. Hopefully the medical care will be just a good, but I’m not holding my breath.
I just hope that they’re willing to actually treat my pain instead of twisting it into something where I’m taking all of the blame. Since my current doctor thinks that my pain is somehow my fault like I’m purposefully causing pain crises.
Read 5 tweets
35% of children in the US qualify for coverage with Medicaid/CHIP
70% of #sicklecell patients have Medicaid/CHIP (!!!!!)

We think that brings equality because Medicaid/CHIP brings access to care (but not all physicians accept patients with Medicaid/CHIP).

#ASPHO2021 1/n
Why is this important? Because patients with sickle cell disease have a decrease life expectancy! (by 30 years!) Not only that -- Dr. Allison King found that patients with #sicklecell saw that those on Medicaid clearly repeated grade levels. #ASPHO2021 2/n
From the SIT trial - silent cerebral infarcts wasn’t the risk factor.. per capita income was! Look at the OR of 6.4 for those in the lowest quartile. The most at risk are our older males. #ASPHO2021 3/n
Read 6 tweets
Queuing up Dr. Kwiatkowski's of @CHOP_Research giving updated results of the #HGB-206 lentiglobin gene therapy for #sicklecelldisease in today's plenary session at #ASPHO2021. Follow this thread for more 1/n Image
Why are we talking about gene therapy for #sicklecell. It's estimated <15% of patients have a sibling matched stem cell transplant donor! 2/n
Today's talk is going over group C - eligibility included here. Enrollment has been completed. This is for SS and S beta0 and S beta+ genotypes. 3/n Image
Read 13 tweets
#TCTM21 Significantly worse EFS and higher incidence of graft failure among #SickleCell disease patients undergoing #BMTsm on Medicaid compared to private insurance - Very important study from @CIBMTR by Tatenda Geraldine Mupfudze and colleagues tct.confex.com/tct/2021/meeti…
Similar trend in #BMTsm utilization in adult acute leukemia patients’ - public insurance, race and older age has significant influence on #HCT utilization, abstract by Silas Day #TCTM21 tct.confex.com/tct/2021/meeti…
#TCTM21 Naseem Esteghamat identified disparities in auto #HCT utilization, specifically among African Americans vs Whites (OR: 0.68), patients covered on Medicare or Medicaid vs private insurance (OR: 0.79), and those with lower SES (OR: 0.71). tct.confex.com/tct/2021/meeti…
Read 5 tweets
I want to thank @edyong209 for the great shout out this morning. I have been trying to focus on marginalized communities hit hard by the pandemic and to look for stories others aren't writing. Here's a 🧵about some of this work. statnews.com/2020/11/17/how… via @statnews
I'd pretty much left journalism in 2019 due to having another job, the sudden death of my father, and a crippling house fire. I had a lot to deal with. But as the pandemic grew worse it was clear science writers were desperately needed. I was thrilled to return to @statnews.
One of my first stories was seeing what was happening on the ground in CA. Community clinic docs were among the first to see what we'd all soon learn: that minorities were being hardest hit. @MKushel @NormaJTorres and Louise McCarthy @CCala saw it coming. statnews.com/2020/04/15/fea…
Read 11 tweets
Thank you to @BethDarnall for speaking at #Minnesota @MinnesotaDHS #Opioid Work Group mtg on Thursday: Spoke of importance of #patientcenteredcare, #patientconsent necessary if taper & strongly advised AGAINST force tapers & using pre-determined MME'S. #ChronicPain #NoOneSize
MN #opioid Work Group created Taper Guidance. It will be out 4 public comment soon. Some areas extremely problematic. Although it states NOT 2 taper solely 2 meet system or state policy; MN Quality Improvement requires Drs 2 meet MME thresholds = TAPER TO MEET STATE POLICY. 🤔
If #ChronicPain pt wants 2 try 2 taper from #opioid analgesics 4 any reason & CONSENTS, there needs 2 be safe way 2 do it. Problem throughout U.S, incl #Minnesota; is non-consensual tapering. Many experts, incl #addiction specialists, stress dangers & even state it's UNETHICAL.
Read 11 tweets
Dear #MedTwitter, you need a be more aware of the after effects of #MedTrauma. Intense research or questioning/constant second opinions doesn’t always mean hypochondria. Maybe someone was misdiagnosed one too many times which led to too many life threatening situations.
Constant over-explaining doesn’t mean that they’re trying to make up a story. Maybe they just want to make sure that you have all the details to avoid misdiagnosis. Maybe they just want to make sure that you BELIEVE THEM.
These are just a few examples, but PTSD due to #MedTrauma is real and it greatly impacts people with chronic illnesses. I know because I have it myself. My last few health crises I diagnosed myself because I was constantly being misdiagnosed which even put my life at risk.
Read 22 tweets
I’ll say it AGAIN for the people in the back... I DON’T WANT A “CURE” FOR #SICKLECELLDISEASE! What I DO want is for our pain to be TREATED NOT IGNORED. I DON’T want to worry about the ER docs labelling me as a drug seeker out of IGNORANCE/BIGOTRY. 1/?
When I come to the ER, I want to be BELIEVED when I say I’m having crisis pain. Followed by PROMPT AND EMERGENT administration of the dose of pain medication I NEED! Sickle Cell crises are an #ActualEMERGENCY and require immediate treatment! More time in pain = MORE COMPLICATIONS
The longer someone is in pain without relief, the more likely they’ll need an admission into the hospital! Also, pain scales are garbage! Personally I measure my pain by my ability to function. If I’m in the ER, I’m not functioning!
Read 13 tweets
Uncommon adversity birth uncommon opportunity

Let thhat sinkkk💡

Uncommon adversity birth uncommon opportunity

The story of @SAMIupdate...here Is where it all started👇
It started with this autobiography of Toyin Adesola @iamtoyinadesola

I will be doing this book review../1💪 Image
..over the next 4 days to culminate on 1st September, which is 55th birthday 🎁 of the #SickleCell General @iamtoyinadesola.

And I trust it will be very impactful and exhilarating just like the review of #NelsonMandela's 'Long Walk to Freedom' that I did in July.. /2
..with the benefit of hindsight, @SAMIupdate launched out after the review of this book on the phenomenal Funmi Iyanda @Funmilola's New Dawn on @NTANewsNow.
The NGO turned 12 this year 🎉

I intend to make sense of the 104-page book in thread format

You will love ❤️ it

Go../3
Read 125 tweets
Detroit. The history of my city is racially-charged and rooted in the effects of structural and individualized racism. #COVID19 exposed that. As a #SickleCell physician who cares for black patients with #chronicpain and #chronic disease, I have known that for a long time 1/n
#Detroit has the largest black community in the country (84.3%). In 1910 it was 98.7% white, but by 1930, due to the Great Migration the black community grew. The increase in diversity was perceived as a threat to the way of life and the isolation of black people began. 2/n
A terrible example of this comes from 1925, an African American physician #OssianSweet, found his home on surrounded by an angry mob; a neighborhood where he was the most affluent, the resentment from his neighbors that a black man had infiltrated, caused hate and violence. 3/n
Read 14 tweets
My short thread on the #SCDBill2020 starts now.

Here are my personal observation on the right step in the right direction by @NGRSenate. The bill as sponsored by Senator Sam Egwu is 'for an act to provide for the prevention, control and management of sickle cell anemia...' /1
My observations which I believe will strengthen the #SCDBill2020 and help it achieve its objectives include:

1. Section 1 labeled sickle cell anemia 'a disease'. This, I believe, will send wrong signal and further deepen stigmatization against persons living with #SickleCell /2
In a country like #Nigeria where you can be stigmatized on just about anything - religion, minority, penury, etc - the tag 'disease' will only become more fuel for stigmatization against these persons.

Enough shaming already exists for them in the society as a whole /3
Read 42 tweets
This #WorldSickleCellDay, let us renew our commitment to improving the lives of everyone living with #SickleCell disease around the world and celebrate the important progress we’re making against the disease. Join the movement to help raise awareness about #SCD!
#SickleCellDisease is a serious health condition which affects the body’s red blood cells and can cause intense episodes of pain. Learn more about #SCD from @CDC_NCBDDD and @CDCgov: cdc.gov/ncbddd/sicklec…
As a pediatric intensive specialist I have cared for hundreds of children w/#SickleCell. They are my inspiration to fight every day. My goal & passion is to create a future where we can provide individuals w/#SCD a long life free from pain & complications. The time is now #WSCD20 Image
Read 5 tweets
You have heard people with sickle cell anemia talk about having "crisis".

Do you understand what "crisis" mean?

#SickleCellAwareness
Let's take it back a bit. #SickleCell isn't an attack from your village people. The sequence of event that leads to this condition occurs on a molecular level. Far too tiny to see with your eye but let me explain

#SickleCellAwareness
When you go to the lab to check your genotype, what they look for is a specific set of "proteins" that determine the genotype. This protein is called hemoglobin. Various ingredients combine to form this hemoglobin and they follow a specific sequence

#SickleCellAwareness
Read 17 tweets
(1/5) Today’s #SundaySpotlight on #PublicHealth is all about #WorldBloodDonorDay! This is both a call for donations AND a thank you to those that volunteer their life-saving gift of blood. A sufficient supply of blood can only be achieved through consistent and diverse donations.
(2/5) #DYK that a single blood donation can save up to 3️⃣ lives?

#DYK that every 2 seconds, someone in the U.S. needs blood?

There continues to be a need for blood donations and if you’re healthy and able, YOU can help! More via @MensHealthMag: menshealth.com/health/a327997…
(3/5) 🩸 Blood & plasma donations aren’t only needed during emergencies. Black & African American donors are needed to ensure a diverse supply and to support patients like those living with #SickleCell Disease.
Read 5 tweets
Thread***

Sickle cell disease will always be a disease that means so much to me.. Growing up seeing my brother battle with this disease was hard. Many nights my family would be in the hospital with him watching him in excruciating pain. Many nights i would see the
stress on my parents face as their youngest son was going through horrific pain. Sometimes i would pray that God would take this disease away from my brother and give it to me so he wouldn't have to suffer anymore. #sicklecell patients already have it hard enough
with this disease now add on top of that racial bias that they have to deal with. Many times either me or my dad would have to advocate for him in the ER to get proper and urgent care and make sure his pain is adequately managed... The treatment my brother has received
Read 6 tweets
I truly feel for those who suffer with addiction and i am glad we have medications and tools to help with that as well.. It is truly devastating to lose someone to addiction and i hate hearing stories about it. I also have the same type of compassion for those
who suffer with chronic pain. My brother has #sicklecell and he suffers with chronic pain. Whenever he has his crisis he suffers excruciating pain that cuts deep to the core... We have a class of medications called opioids that have helped patients in pain for centuries..
It saddens me to see people demonize this class of medications which Have helped so many people cope with their pain. Yesterday I was taking care of this lady in our hospital who was going to be going to hospice the next day
Read 6 tweets
Alright, should we do this? I'm going to attempt my first mini-#tweetatorial on this little capsule right here...

#hydroxyurea is currently the mainstay of disease modifying therapy in #sicklecell disease and with the new landscape of therapeutics, I think we should dive in /1
It was a century before its first clinical use in cancer that hydroxyurea was created by Drs. Dresler and Stein in Germany. The first approval for clinical use came in 1967 from the @US_FDA for oncological indications. /2
And then in 1984, two key papers in @NEJM and @jclinicalinvest by Letvin et al and Platt et al - FETAL HEMOGLOBIN production! And this of course was the 🔑 that unlocked the potential of HU in SCD. This was the game changer. /3
Read 25 tweets
Today I’m in Orlando with @ASH_hematology meeting with Ghana, Uganda and Tanzania on #SickleCell disease. #SCD Image
@ASH_hematology 300,000 children are born with #SCD each year in Africa; most will die unnecessarily before age 5 years. Today, we continue our work to save this children with our partners @ASH_hematology and several African delegations.
@ASH_hematology As we work to improve the care of children with #SCD in Africa, we must re-double our efforts to improve care for SCD patients in our nation. Far too few patients receive standard of care, or appropriate pain prevention and management.
Read 3 tweets
#TRIBECON begins #Pravara; felicitations to #AbhayBang @SearchGad & #sudarshan #VGKK for their inspiring work on #TribalHealth; @DrLahariya @whoindia among others felicitated
#abhayBang #healthsystem design for tribal communities need to be relooked for #UHC; strategies & schemes must adapt with local social & cultural context; recollects #Brainstorming with @DesirajuKeshav at @SearchGad leading to #ExpertCommittee #tribalhealth @TribalHealthIND
#TRIBECON #AbhayBang notes with happiness increasing interest in #tribalhealth research, yet this continues to be “off the beaten path”; congratulations to #pravara medical college in bringing this together; the proposed #Bandardhara declaration to improve #tribalhealth research
Read 81 tweets
Today marks 18 months as @HHS_ASH. My sincerest gratitude to @realDonaldTrump and @SecAzar for this opportunity!
Thank you to the dedicated professionals within OASH and the #publichealth community for supporting our initiatives that combat substance abuse, #HIV, #vaccine hesitancy, #SickleCell, health disparities, and many other issues.
It has been the honor of my life to lead the US Public Health Service #CommissionedCorps together with @Surgeon_General Adams.
Read 5 tweets
Thread:

Excited to announce the first cohort of @Pozen @Commonwealthfnd fellows in Minority Health Leadership @YaleSOM. With these stars, the future is, indeed, very bright. som.yale.edu/programs/emba/… @YaleMed @ERIC_Yale @YaleSPH @Yale

1/
Dr. Cecelia ("Cece") Calhoun is a Pediatric Hematologist/Oncologist @WUSTLmed @WUSTL, focused on improving outcomes for patients with #SickleCell disease.
Kennetha Gaines is clinical leader and #NursePractitioner @YourMLKCH in LA, focused on maternal and newborn care. She is also a doctoral nursing candidate @YaleNursing !
Read 9 tweets
I have read through the comments on this thread and seen so many joking about this! Have seen people ask the thread owner to park well! What I say is simple, don't bring a child here to go through what I have gone through for 33 years! Am moved to tell my story a bit!
I don't like the life I have to live under rules, treat malaria every month, filter out certain meals, cant do certain sports, cant swim, the room you sleep in must not be too cold or too hot, drugs on daily basis, antibiotics every now and then to keep infections away, consume
over 6-8 litres of water daily, Pain killers every now and then, I cant even talk about the cost of bringing up such children. First quarter of 2019 alone, spent over 780k on drugs and that should be running out by June, this excludes frequent malaria treatment &healthy eating!
Read 13 tweets

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