Discover and read the best of Twitter Threads about #SickleCellDisease
Most recents (19)
How my half day work ✂️ on a Saturday is progressing…😄
1. Young lady with 🫀 disease referred by ENT doc with epistaxis 👃
1. Young lady with 🫀 disease referred by ENT doc with epistaxis 👃
Pounding heart 💓 with loud P2 & PSM at the lower left sternal area
I got the mother and she said since 6 months she is blue 🔵
Centralcyanosis➕Clubbing➕VSD➕PulmHTN
There was Hx of recurrent LRTIs in childhood.
I got the mother and she said since 6 months she is blue 🔵
Centralcyanosis➕Clubbing➕VSD➕PulmHTN
There was Hx of recurrent LRTIs in childhood.
I sent her 🏠 to get old records 🔖 and our suspicion of cyanotic CHD with incd 🫁 blood flow due to TOGV was right 🫵🏽
1/As promised & after reading $CRSP latest Q4 2022 #financial #report here is my impression regarding @CRISPRTX latest corporate status. I have focused only on the main issues that I found to be the most interesting & relevant. #CRISPR #BioTech #FinTwit #Genomics #GeneEditing 🧵
2/IMO the most significant corporate event in Q4 was $CRSP announcement that regulatory Exa-cel submissions of both #SickleCell & #BetaThalassemia validated in the #EU & #UK & that the @US_FDA BLA submission is on track by the end of Q1 ‘23 - possibly reaching the #markets in ‘23
3/Exa-cel/CTX001 - the key program in $CRSP portfolio, is an #autologous Ex-Vivo #CRISPR/#Cas9 #GeneEditing therapy aimed for patients suffering from #TDT or severe #SCD. The latest readout for both programs was phenomenal with 42/44 TDT & 31/31(!) demonstrated remarkable results
1/@GraphiteBio presented preclinical results supporting the use of a single-#cell #RNA #sequencing method to assess #gene correction outcomes in #patients treated with nulabeglogene autogedtemcel (nula-cel) - GPH-101. #BioTech #CRISPR #GeneEditing #Genomics $GRPH #ASH22
2/GPH101 (nula-cel) is a #CRISPR #Cas9 #GeneEditing autologous #stem #cell-based #therapy in clinical development aimed to treat #SickleCellDisease. GPH101 is designed to directly correct the underlying mutation, thereby decreasing HbS production & restoring HbA expression #ASH22
3 $GRPH gene correction platform involves editing hematopoietic #stem cells found in the #bonemarrow that develop into various types of #blood #cells. Since red blood cells lose their genomic DNA during maturation-tracking #GeneEditing in mature cells via sequencing is impossible
🌟Just released! Outstanding @bloodbankguy 🎧podcast w/ Dr. Sujit Sheth. Comprehensive discussion on transfusion-dependent #thalassemia focusing on pathogenesis, terminology & role of transfusion support. Listen now for CE credit.
For the pearls, follow the #Tweetorial below👇🏽
For the pearls, follow the #Tweetorial below👇🏽
Derived from the Greek word “thal” or sea🌊thalassemia known as Mediterranean anemia, is an anemia affecting 1.5% of the world population along the “thalassemia belt” extending from the Mediterranean, the Middle East, India, SoutheastAsia, up to China. Like SCD, thalassemias are:
Thalassemias are also hereditary and may offer protection against malaria. However, unlike #sicklecelldisease which results in qualitative Hb defects, thalassemia causes a quantitative defects in either Hb α or β chains causing both ineffective erythropoiesis and anemia.
Read this thread for key points from an #EBHC impact
story on how health outcomes were improved for
adolescents with #SickleCellDisease.
story on how health outcomes were improved for
adolescents with #SickleCellDisease.
Sickle cell disease is a serious, inherited, lifelong condition that affects most countries in the African region. It is associated with a very high rate of mortality of about 50-90% & lifelong morbidity. In some areas of sub-Saharan Africa, up to 2% of all children are born SCD.
Adolescents with sickle cell disease have the highest rate of morbidity as they struggle to manage their condition through early recognition of signs & symptoms, when to seek medical care & in practicing routine selfcare behaviours.
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
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
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!
What Is Anemia?
Anemia develops when you don't have enough robust, healthy red blood cells to carry oxygen throughout your body. The blood cells may lack enough hemoglobin, the protein that gives blood its red color. Anemia affects about 7% of the US population and is more common
Anemia develops when you don't have enough robust, healthy red blood cells to carry oxygen throughout your body. The blood cells may lack enough hemoglobin, the protein that gives blood its red color. Anemia affects about 7% of the US population and is more common
in women of child-bearing age, the elderly, women of color and Hispanic women.
Symptoms of Anemia
If you're often tired even though you've slept well or you lack the energy for normal activities, you may have anemia. It can be an underlying cause of memory or mood problems. Symptoms range from none to mild to life-threatening and may include:
If you're often tired even though you've slept well or you lack the energy for normal activities, you may have anemia. It can be an underlying cause of memory or mood problems. Symptoms range from none to mild to life-threatening and may include:
Read this thread for key points from an #EBHC impact story on how health outcomes were improved for adolescents with #SickleCellDisease
Sickle cell disease is a serious, inherited, lifelong condition that affects most countries in the African region. It is associated with a very high rate of mortality of about 50-90% & lifelong morbidity. In some areas of sub-Saharan Africa, up to 2% of all children are born SCD.
Adolescents with sickle cell disease have the highest rate of morbidity as they struggle to manage their condition through early recognition of signs & symptoms, when to seek medical care & in practicing routine selfcare behaviours.
To celebrate #WorldSickleCellDay, we'll be sharing a series of short videos created by our paediatric haematology and red cell team. 📹
In our first video, patients Mapaolo, Elle and Jennifer explain what it's like living with the condition 👇
@SickleCellUK | #ShareSickle
In our first video, patients Mapaolo, Elle and Jennifer explain what it's like living with the condition 👇
@SickleCellUK | #ShareSickle
"I have been taking hydroxyurea since the age of ten and I have recently started the red cell exchange."
Everyone's treatment journey is different and individual to them - hear from some of our patients about their experiences. #SickleCellAwareness #WorldSickleCellDay
Everyone's treatment journey is different and individual to them - hear from some of our patients about their experiences. #SickleCellAwareness #WorldSickleCellDay
"Having a good support system really does help me feel less alone"
In addition to treatment, some of our patients say talking and sharing their experiences with others helps them to cope with their condition. #SickleCellAwareness #WorldSickleCellDay
In addition to treatment, some of our patients say talking and sharing their experiences with others helps them to cope with their condition. #SickleCellAwareness #WorldSickleCellDay
Today is #WorldSickleCellDay & we want you to know more about #SickleCellDisease.
It is an inherited blood disease, that causes the red blood cells to have sickle shape thereby, disrupting the free flow of blood & oxygen in the body. #KnowYourGenotype
It is an inherited blood disease, that causes the red blood cells to have sickle shape thereby, disrupting the free flow of blood & oxygen in the body. #KnowYourGenotype
People living with #SickleCellDisease, may often experience serious pains, weakness of the body, delayed growth & development.
They may also look pale due to shortage of blood
as a result of the sudden breakdown of red blood cells in the body .
#SickleCellWarriors
They may also look pale due to shortage of blood
as a result of the sudden breakdown of red blood cells in the body .
#SickleCellWarriors
Factors such as cold weather, too much exercise, tobacco smoke, lack of fluid, plane flights & high altitudes can contribute to the painful attacks (crisis), experienced by those living with #sicklecelldisease.
#SickNotWeak
#SickleCellAwareness
#SickleCellWarriors
#SickNotWeak
#SickleCellAwareness
#SickleCellWarriors
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
You have heard people with sickle cell anemia talk about having "crisis".
Do you understand what "crisis" mean?
#SickleCellAwareness
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
#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
#SickleCellAwareness
Today, 19th June is World Sickle Cell Day – a day of raising awareness!
#WorldSickleCellDay is the @UN's recognised day to raise awareness of sickle cell at a national and international level. On 22nd December 2008, the United Nations General Assembly...
#WRNHealth
#WorldSickleCellDay is the @UN's recognised day to raise awareness of sickle cell at a national and international level. On 22nd December 2008, the United Nations General Assembly...
#WRNHealth
...adopted a resolution that recognises sickle cell disease as a public health problem and “one of the world’s foremost genetic diseases.” The international awareness day is observed annually with the goal to increase public knowledge and an understanding of..
#SickleCellDisease
#SickleCellDisease
and the challenges experienced by patients and their families and caregivers.
#SickleCellDisease (SCD) is a group of blood disorders typically inherited from a person's parents. The most common type is known as Sickle Cell Anaemia (SCA). It results in...
#WorldSickleCellDay
#SickleCellDisease (SCD) is a group of blood disorders typically inherited from a person's parents. The most common type is known as Sickle Cell Anaemia (SCA). It results in...
#WorldSickleCellDay
Why does the Pain Management Best Practices report matter? #1: It emphasizes that #pain is an enormous public health problem with profound individual & societal consequences. #aplanforpain (1/7 - continued)
#2: it points out that successful management of pain requires individualization of care. There is no one-size-fits-all. (2/7) #aplanforpain
#3 it confirms that best practice in pain management is multimodal, multidisciplinary, integrated... and calls out the lack of affordability of many nonpharmacological treatments. (3/7) #aplanforpain
A Person with Sickle Cell Disease can live a long and high quality Life.
People with SCD can lower their chances of difficulties from the disease and enjoy many normal activities by
Getting regular checkups with their Doctor.
People with SCD can lower their chances of difficulties from the disease and enjoy many normal activities by
Getting regular checkups with their Doctor.
Following treatments prescribed by their Doctor
Preventing infections by taking simple steps including washing of hands.
•Do You Know Your Genotype?
Let's start with "What is a genotype?".Trust me,many still confuse it with blood group.
Genotype is the genetic make up of any individual. This is all the information found inside the individuals cell.
So it means every human being has this "Genotype
Let's start with "What is a genotype?".Trust me,many still confuse it with blood group.
Genotype is the genetic make up of any individual. This is all the information found inside the individuals cell.
So it means every human being has this "Genotype
"and there are 4 main types of human genotype ie:
1. Genotype AA
This genotype has the most advantage when it comes to choosing a partner, people with genotype AA can reproduce with any other genotypes without having the fear of producing offspring with the sickle cell disease
1. Genotype AA
This genotype has the most advantage when it comes to choosing a partner, people with genotype AA can reproduce with any other genotypes without having the fear of producing offspring with the sickle cell disease
2. Genotype AS
People with this genotype are at great disadvantage when it comes to choosing a partner because they are sickle cell carriers and can only settle with genotype AA alone. This is to Avoid them to have offspring’s who will carry the sickle cell disease.
People with this genotype are at great disadvantage when it comes to choosing a partner because they are sickle cell carriers and can only settle with genotype AA alone. This is to Avoid them to have offspring’s who will carry the sickle cell disease.
What IS Sickle Cell Disease?
The Sickle Cell Disease is a group of inherited conditions that affect the red blood cells by turning them from their normal disc shape (resembling a round plate) to that of a sickle (mirroring the shape of the Disney trademark moon or a boomerang).
The Sickle Cell Disease is a group of inherited conditions that affect the red blood cells by turning them from their normal disc shape (resembling a round plate) to that of a sickle (mirroring the shape of the Disney trademark moon or a boomerang).
This altering of shape causes a number of problems which we'll discuss subsequently.
Can also be explained as
Sickle Cell Disease is an inherited condition that affects the red blood cells and various organs if the body.The disease causes occasions of sickling where one
Can also be explained as
Sickle Cell Disease is an inherited condition that affects the red blood cells and various organs if the body.The disease causes occasions of sickling where one
experiences pain and other symptoms. These occasions or episodes of sickling can be triggered by dehydration, cold or other infections and as such, people with this disease must drink a lot of water to stay hydrated and get treatment. It is necessary to note though that in
#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
