Sickle Cell Awareness Thread: Sickle Cell Awareness Month 2023! UPDATE: FDA APPROVES GENE THERAPY

playahaitian

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We walking for Sickle Cell Awareness today.

It is grossly underfunded because victims of this disease are predominantly BLACK & LATINO.

We need to understand we are in a entire system created and functioning to subjugate us.

All we got is each other.

Please go out and support.
 

playahaitian

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https://www.statnews.com/2017/09/21/sickle-cell-racism-doctors/

My medical school lesson was tinged with racism. Did that affect how I treated a sickle cell patient years later?
By JENNIFER ADAEZE OKWEREKWU @JenniferAdaeze

SEPTEMBER 21, 2017

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MIKE REDDY FOR STAT



T

he young woman was curled up in a ball. She was sweating and shivering from pain. As she answered my questions — all my many, many questions — tears fell silently from her eyes.

I was a third-year medical student, and the resident I was working with had asked me to evaluate this woman. She had been here several times before. She was in the middle of a sickle cell crisis.

I remembered this young woman while reading STAT’s recent story about how too many patients with sickle cell face exhausting, infuriating — and life-threatening — delays in getting care when they arrive in emergency rooms in excruciating pain from a restricted flow of oxygen to their organs.

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Thinking back, I’ve recognized the truth of that article: We don’t always take sickle cell seriously. I realized, too, that I, a doctor of color, might be complicit in bias against these patients. The more I think about it, the more I realize how deep the roots of that injustice stretch.


READ MORE
‘Every time it’s a battle’: In excruciating pain, sickle cell patients are shunted aside

In my first year of medical school, we learned about sickle cell — the genetics that lead to misshapen blood cells, and the damage such cells could do to the body. Our instructor mentioned that testing for sickle cell needed to be handled carefully, because they might become de facto paternity tests.

Such a statement could apply to other diseases with the same genetic inheritance patterns, such as cystic fibrosis or Tay-Sachs disease.

But we never talked about how testing for those diseases, which affect mostly whites, might lead to paternity shake-ups. That prospect was only mentioned with sickle cell — in a remark that carried a subtle indictment of a particular black family structure. Later, as my classmates and I talked about sickle cell in a discussion group, someone cracked a “baby-daddy” joke. Eventually, this daytime TV clip, a staple of the talk show circuit, found its way around the entire class.

It was funny. I laughed. I hadn’t started seeing patients yet, so hadn’t yet experienced how such behavior could, in the long run, lead us to undermine some of our most vulnerable patients. I hadn’t yet realized how the insidious association between sickle cell and ridiculous paternity questions could make us internalize racially denigrating attitudes — and lead us to fail to take our patients seriously.

I didn’t have racist intent when I chuckled at that video. My classmates probably did not, either. But the tone set during that lesson on sickle cell may have affected how we all thought about the disease, and about our patients, for years to come.

We need to be sure that medical students learn about every disease without judging the people living with it.

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The sickle cell patient I evaluated in the hospital two years later was in bad shape. On top of her tears of pain, on top of the sweat and the shivering as her body revolted against her through no fault of her own, she had a fever and a cough. She needed fluids, pain medication, and oxygen at a minimum, and I planned to ask my resident to order these treatments. Slowly, I came to realize that she needed more than that: She had symptoms of acute chest syndrome, a leading cause of death for patients with sickle cell disease.

I quickly found my resident, apologized for interrupting the ultrasound he was doing, and said, “I think my patient has ACS.” I told him that I’d looked it up and learned that ACS requires prompt management to prevent death. “I think you should come look at her,” I said.

I was right. A chest X-ray confirmed the diagnosis and the woman was admitted to the hospital for treatment.

As sick as she was, why was I, a medical student, the first one to evaluate her? The emergency room triage system is supposed to send those in the most acute need to more experienced physicians. This patient had a long medical history of sickle cell-related issues and clearly needed urgent treatment by a knowledgeable clinician.

Yet she had ended up with me.

I had then compounded her misery — and perhaps put her life at risk — when, in trying to be a good medical student, I spent a lot of time asking her questions, and then spent even more time researching the complications of ACS before bringing my concerns to my supervisors.

Why did I wait so long? Perhaps I trusted that my residents and attending physicians could accurately triage each patient’s risk, and would only allow me to practice my clinical skills alone in low-risk settings. Perhaps I wanted to prove that I could be compassionate but also clinically discerning — not get played by patients that were only after pain medications. Perhaps, I too had learned not to take this particular kind of suffering that seriously. I struggled with this existential crisis as I watched my patient with a sickle cell crisis get wheeled out of the emergency room on a hospital bed.


READ MORE
With a rapper’s death, harsh spotlight falls on slow progress against sickle cell

The message I took away: Her care was not a priority.

This attitude is pervasive from the bedside to the lab bench. Research on sickle cell disease lags far behind. More people suffer from sickle cell than cystic fibrosis, but cystic fibrosis research gets 3.5 times the funding that sickle cell does.

Who decides what’s pressing and important? How do we communicate this urgency to the next generation of doctors and physician scientists in training?

If we are unable to challenge our attitudes and change our priorities, my fear is that we will continue to marginalize the care of these patients, especially in our efforts to curb the opioid epidemic. Deciding how to treat pain can be really challenging, regardless of the diagnosis. But the question should never be one of deciding whose pain to treat and whose illness to take seriously.

As a doctor and a woman of color, I am renewing my commitment to treat all patients with equal dignity and concern. I hope I will continue to recognize when my attitudes have been wrongly shaped by racism, whether subtle or overt — and will continue to fight to avoid letting such views affect the way I practice medicine.
 

playahaitian

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http://pix11.com/2017/09/16/annual-sickle-cell-walk-in-central-park-brings-awareness-to-nyc/

CENTRAL PARK — It was a celebration of life near the bandshell in Central Park where close to 1000 people gathered for the 19th Annual Sickle Cell Education and Awareness Walk.

Many of those in attendance have the disease like 65-year-old Donnette Carroll diagnosed when she was 25.

"Sickle Cell is a global blood disorder that affects millions of people around the world," Carroll, the president of the Sickle Cell Thalessemia Patient Network, told PIX11. "Here in the US, you have only 100,000 people with it so that's considered rare. But it is clearly not a rare disease around the world," Carroll added.

Outreach workers from the Sickle Cell Thalessemia Patients Network talked about what it is like to live with Sickle Cell.

"You really have to watch what you eat, watch how active you are," Chauncy Mudayh, an outreach worker told PIX11. "Sometimes you want to run as far as the next person, but you have to take steps to go that far," he added.

The star of the day, one of the grand marshals of the 5K walk, is a member of the PIX11 family, 12-year-old Parker Todd, the son of PIX11 News reporter Nicole Johnson.

Parker has just written a book called "The Adventures of the Sickler" to helps others who, like himself, have Sickle Cell.

"I went to other hospitals and I saw other kids suffering with other diseases," Parker Todd, told PIX11. "And I just wrote this book for them and to bring out the inner Sickler in them," he added.

"When Parker was born, we said we'd take it one day at a time," Nicole Johnson, a PIX11 reporter told PIX11. "Now that he is 12, he's been crisis free for two years and that's amazing for someone with Sickle Cell. So I am really inspired, excited, and proud."

"This is only the beginning," Johnson continued, "So let's see what happens next year."

A portion of the proceeds from the sale of "The Adventures of the Sickler" will be donated to the Sickle Cell Thalassemia Patients Network.

 
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playahaitian

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https://www.nytimes.com/interactive/2017/well/patient-voices-sicklecell.html?mcubz=3

Patient Voices: Sickle Cell Anemia

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By KAREN BARROW



Sickle cell anemia is an inherited disease in which red blood cells are unable to properly carry oxygen throughout the body because of their distinctive crescent-like, or sickle, shape. The condition causes severe episodes of pain and fatigue, and it can lead to damage to the eyes and other organs. Approximately 100,000 people are living with sickle cell disease in the United States, and 300,000 babies are born with the condition every year across the globe. And while it can affect people of different races, a majority are African-American. Here, six men and women speak about the impact sickle cell anemia has had on their lives and families.

Do you or does someone you know have sickle cell disease? Tell us about how you manage your condition.


  1. Cassandra Dobson, a registered nurse, was born in Jamaica with sickle cell disease. While she was taken to the local hospital for treatment, her mother also went to see the local witch doctor for advice. The witch doctor suggested changing Ms. Dobson’s first name as a way of changing her health. So, Ms. Dobson’s parents kept changing her name until she seemed to get better. Of course, sickle cell disease normally improves in cycles, and Ms. Dobson eventually became sick again.

    In her early teens, Ms. Dobson moved to the United States. As soon as she disembarked from the plane, she had a severe sickle cell crisis. Rushed to Jamaica Hospital Medical Center in Queens, Ms. Dobson was treated for kidney failure and severe pain. She was given a blood transfusion to combat the disease.

    Ms. Dobson says that her worst symptom is fatigue, but by managing her overall health, Ms. Dobson has been largely able to avoid the strong painkillers that are so common in sickle cell care.

    Ever since her treatment at Jamaica Hospital, Ms. Dobson has pursued a career in nursing. She is dedicated to improving the care of all of her patients, but particularly to increasing awareness of sickle cell disease and the best ways to treat its symptoms.

  2. Hoping to Be Taken Seriously
    Andre Hinckson, 36, Queens
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    Andre Hinckson was born in Guyana and came to the United States with his parents at age 12. His mother did not know she was a carrier of the sickle cell gene until her son was born with the disease.

    Sickle cell anemia causes episodes of severe pain for Mr. Hinckson, and it has affected his vision. He takes powerful painkillers to manage his pain, but his body has adapted to these medications, and they are no longer as effective as they once were. Because of this, Mr. Hinckson is unable to work.

    When Mr. Hinckson does have a severe episode of pain, he has to go to the hospital for narcotics or a blood transfusion. Because he is so frequently in the hospital, Mr. Hinckson says that staff members sometimes view him as a “drug-seeker.” He finds it frustrating that hospitals cannot find a quick way to identify him as a sickle cell patient.

  3. The Family Affair: A Child’s View
    Shanoah Moore, 8, Cincinnati
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    Shanoah Moore may look like an average 8-year-old girl, but she is living with sickle cell disease.

    Shanoah has occasional episodes of pain and fever, and while a heating pad helps alleviate the pain sometimes, the more severe episodes require over-the-counter pain relievers. Occasionally, Shanoah is taken to the hospital with high fever or severe pain.

    Shanoah’s teachers are all aware that she has sickle cell disease. They allow her to go to the bathroom more frequently and drink water during class to stay hydrated.

    Shanoah doesn’t feel limited by her disease. While she can’t play outside in very hot or very cold weather, she finds ways to participate in most activities.

  4. The Family Affair: Careful Monitoring
    Sonya Moore, 38, Cincinnati
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    Sonya Moore’s daughter, Shanoah, was born with sickle cell disease. Shanoah’s mother, Sonya Moore, did not know that she was a carrier of the sickle cell trait, and she was very upset when she found out that her daughter had this chronic disease. “My world crumbled around me,” she said.

    Ms. Moore has tried to maintain a normal family life in spite of Shanoah’s illness. Her daughter goes to school most days, but playtime is generally held indoors because those with sickle cell can’t easily maintain a constant body temperature in hot or cold weather.

    The entire Moore family knows to watch for signs that Shanoah isn’t feeling well. They have learned that if Shanoah gets quiet or suddenly feels very warm, she may be having a sickle cell crisis.

    Ms. Moore advises other parents of children with sickle cell disease to find another family going through the same thing for support. Talking to other parents, she says, can help ease the burden of the disease. Ms. Moore urges other parents to learn as much about sickle cell disease as they can to ensure their children get the best care. “You have to be an advocate for your child,” she said.

  5. Two Sons; Two Instances of Sickle Cell
    Tiffany Dews, 33, Richmond, Va.
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    Tiffany Dews and her husband, Ronald Dews, Jr., are both carriers of the sickle cell gene. Any child they have has a 25 percent chance of inheriting the trait from both parents, and thus having sickle cell disease. Tiffany Dews’s two sons, Tracy, 8, and Riley, 4, were both born with sickle cell disease.

    The family recently moved to Virginia from New York. Ms. Dews says that the warmer climate has helped reduce her sons’ symptoms.

    While they can participate in most activities, Tracy and his brother have to avoid contact sports and swimming because their bodies do not easily adjust to sudden changes in temperature. The family has also had to educate the boys’ teachers about sickle cell disease. They are allowed to keep a water bottle at their desk and rest when they need to during class.

    Mr. and Ms. Dews have high hopes for their sons. They encourage their children to become anything they want to be and envision a future where sickle cell disease is an afterthought in their lives.

  6. The Emotional Toll
    Gwendolyn Brown, 46, Cincinnati
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    Gwendolyn Brown, a social worker, believes the worst part of living with sickle cell anemia is the stigma associated with the condition. She tries to educate people about the disease in the hopes of eradicating this misunderstanding.

    Ms. Brown’s parents were told she had sickle cell anemia when she was 4 years old. At the time, a doctor suggested placing Ms. Brown in a long-term care facility. Ms. Brown credits her parents for treating her like the rest of their children. She believes that because she wasn’t coddled or treated differently, she has learned how to live a largely normal life.

    Ms. Brown tries to stay active by dancing at her church and exercising. She is careful to get needed rest, but does everything she can when she has the energy.

    Ms. Brown’s granddaughter, Erianna Harris, is also living with sickle cell disease. Ms. Brown hopes that her granddaughter will also be able to live a largely normal life without many hospital visits or periods of illness. “Get educated about sickle cell, and stay educated,” she advises.
 

mangobob79

Rising Star
BGOL Investor
I wonder where all the sickle cell challenges at...


:idea:

We walking for Sickle Cell Awareness today.

It is grossly underfunded because victims of this disease are predominantly BLACK & LATINO.

We need to understand we are in a entire system created and functioning to subjugate us.

All we got is each other.

Please go out and support.

ITS PREDOMINANTLY A BLOOD DISORDER GENERATED IN PEOPLE OF WESTERN AFRICAN DESCENT ESPECIALLY, THATS WHY I WAS SAYING WE NEED A SCKEL CELL CHALLENGE LIKE WE DID FOR ALS , AND WE'LL SEE HOW MANY OF OUR "WHITE " FRIENDS PARTCIPATE
 

playahaitian

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ITS PREDOMINANTLY A BLOOD DISORDER GENERATED IN PEOPLE OF WESTERN AFRICAN DESCENT ESPECIALLY, THATS WHY I WAS SAYING WE NEED A SCKEL CELL CHALLENGE LIKE WE DID FOR ALS , AND WE'LL SEE HOW MANY OF OUR "WHITE " FRIENDS PARTCIPATE

You know something

Come up with a challenge...

And I'll see if its something I can present to the national and local organizations.
 

playahaitian

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For my baby girl to come home soon

healthy and happy

19ec02f5a2c1050f5651f1ced919317d--black-fathers-fathers-love.jpg


f*ck this disease.

Please bgol fam...

love and celebrate the people close to you.

We only got so much time

cherish EVERY moment.

I know is Christmas...
but forget the gifts its about the people you love

and if you can?

donate to your local Sickle Cell Awareness
 

playahaitian

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The Black Panther Party and Its Dedication to Sickle Cell Awareness
February 16, 2016 by Andrea
blackpantherpost.jpg

Photo: Twitter



A couple of weeks ago, we kicked off Black History Month by recognizing the contributions of several Black Americans to sickle cell disease. This week, we're continuing that recognition by highlighting the efforts of the Black Panther Party (BPP). This is especially significant given the fact that so many people still have strong misconceptions about the Party, misconceptions that came to light again recently after Beyoncé payed tribute to them (this year being the 50th year since they began) during her Superbowl performance.

"Serve the people, body and soul" is actually what the Black Panther Party was all about. This motto was more than a mere tagline or hashtag-worthy saying to the group, though. It was actively practiced through initiatives, such as the free school breakfast program, the free ambulance service, model schools, and the establishment of the People's Free Medical Clinics in several cities across the country. One of the functions of these free clinics? To screen people for sickle cell disease and sickle cell trait, which they began doing in 1971.

As discussed in the book, The Black Panther Party Reconsidered,

"Panthers were at the forefront of an educational and medical campaign to eradicate sickle cell anemia ... In a front page article in The Black Panther, entitled "Black Genocide, Sickle Cell Anemia," the Party accused the United States government of refusing to conduct research to find a cure for sickle cell anemia." By the time 1973 rolled around, the federal government decided to get involved and began funding research into SCD. While this was a win for sickle cell overall, this move also unfortunately disrupted the Party's work. If it hadn't been for them, though, there's no telling how long it would have taken the government to begin work on SCD research.
 
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playahaitian

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The Black Panther Party and Its Dedication to Sickle Cell Awareness
February 16, 2016 by Andrea
blackpantherpost.jpg

Photo: Twitter

http://www.bgol.us/forum/threads/fo...s-dedication-to-sickle-cell-awareness.982737/

A couple of weeks ago, we kicked off Black History Month by recognizing the contributions of several Black Americans to sickle cell disease. This week, we're continuing that recognition by highlighting the efforts of the Black Panther Party (BPP). This is especially significant given the fact that so many people still have strong misconceptions about the Party, misconceptions that came to light again recently after Beyoncé payed tribute to them (this year being the 50th year since they began) during her Superbowl performance.

"Serve the people, body and soul" is actually what the Black Panther Party was all about. This motto was more than a mere tagline or hashtag-worthy saying to the group, though. It was actively practiced through initiatives, such as the free school breakfast program, the free ambulance service, model schools, and the establishment of the People's Free Medical Clinics in several cities across the country. One of the functions of these free clinics? To screen people for sickle cell disease and sickle cell trait, which they began doing in 1971.

As discussed in the book, The Black Panther Party Reconsidered,

"Panthers were at the forefront of an educational and medical campaign to eradicate sickle cell anemia ... In a front page article in The Black Panther, entitled "Black Genocide, Sickle Cell Anemia," the Party accused the United States government of refusing to conduct research to find a cure for sickle cell anemia." By the time 1973 rolled around, the federal government decided to get involved and began funding research into SCD. While this was a win for sickle cell overall, this move also unfortunately disrupted the Party's work. If it hadn't been for them, though, there's no telling how long it would have taken the government to begin work on SCD research.
 

playahaitian

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The Black Panther Party and Its Dedication to Sickle Cell Awareness
February 16, 2016 by Andrea
blackpantherpost.jpg

Photo: Twitter

http://www.bgol.us/forum/threads/fo...s-dedication-to-sickle-cell-awareness.982737/

A couple of weeks ago, we kicked off Black History Month by recognizing the contributions of several Black Americans to sickle cell disease. This week, we're continuing that recognition by highlighting the efforts of the Black Panther Party (BPP). This is especially significant given the fact that so many people still have strong misconceptions about the Party, misconceptions that came to light again recently after Beyoncé payed tribute to them (this year being the 50th year since they began) during her Superbowl performance.

"Serve the people, body and soul" is actually what the Black Panther Party was all about. This motto was more than a mere tagline or hashtag-worthy saying to the group, though. It was actively practiced through initiatives, such as the free school breakfast program, the free ambulance service, model schools, and the establishment of the People's Free Medical Clinics in several cities across the country. One of the functions of these free clinics? To screen people for sickle cell disease and sickle cell trait, which they began doing in 1971.

As discussed in the book, The Black Panther Party Reconsidered,

"Panthers were at the forefront of an educational and medical campaign to eradicate sickle cell anemia ... In a front page article in The Black Panther, entitled "Black Genocide, Sickle Cell Anemia," the Party accused the United States government of refusing to conduct research to find a cure for sickle cell anemia." By the time 1973 rolled around, the federal government decided to get involved and began funding research into SCD. While this was a win for sickle cell overall, this move also unfortunately disrupted the Party's work. If it hadn't been for them, though, there's no telling how long it would have taken the government to begin work on SCD research.
 

playahaitian

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Unfortunately my baby girl will be spending Christmas in the hospital

she has to have another transfusion

Thank you ALL for your prayers and well wishes.

Please love your families over the holidays.

Peace
 

ballscout1

Rising Star
BGOL Investor
Black Panthers couldn't exist today.

Those fools gave away everything and donated their time.

Didn't know time was money

Gave away free breakfast to kids for free.....If they were really conscious they would have sold them that breakfast.

No wonder they folded, giving away medical treatment for free.

They should have started a gofundme and started a hospital
 

playahaitian

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https://innovativegenomics.org/blog/prioritizing-sickle-cell-patients-chance-mend-broken-ties/

Prioritizing Sickle Cell Patients: A Chance to Mend Broken Ties
September 28, 2017 Guest Posts

By Shakir Cannon
I’ve lived with sickle Cell
The basic unit of life. The number of cells in a living organism ranges from one (e.g. yeast) to quadrillions (e.g. blue whale). A cell is composed of four key macromolecules that allow it to function (protein, lipids, carbohydrates, and nucleic acids). Among other things, cells can build and break down molecules, move, grow, divide, and die.

> View Definition Page
" style="box-sizing: border-box; transition: color 300ms ease 0s; color: inherit !important; border-bottom: 1px dashed rgb(57, 57, 57) !important;">cell disease for 34 years now. Never have I imagined that a cure would be imminent, at least not within my lifetime. In fact, I remember days as an adolescent when my pediatric hematologist would tell me I’d be lucky to live long enough to experience college.

Shakir-200x300.png

Shakir Cannon – Cofounder of the Minority Coalition for Precision Medicine
It’s an everyday struggle living with an illness that penetrates all areas of my body where blood flows. Unlike most children who live with sickle cell disease (SCD), my daily struggle didn’t include constant visits to the emergency room plagued by excruciating pain (although I’d experience a great deal of pain in adulthood). Instead, the pain came from my monthly blood transfusions, which became a routine therapy after a stroke, that ultimately devastated my veins. Not long after came the nightly subcutaneously-administered iron chelation therapy overnight infusions. This nightly treatment led my teachers to question whether I was being abused at home (which by the way wasn’t the case at all- I come from a loving household, thank you) due to the common occurrence of bruising and occasional swelling on my arms & legs.

Fast forward 30 years and I’m still receiving the same exact method of treatment. I have continued my tri-weekly exchange transfusion therapy, sacrificing my veins for over a decade after several Port-A-Caths have failed me. It’s extremely disheartening that such a devastating disease, one that’s well studied and even historically credited as the first biomolecular illness (Pauling, 1951), has only gained one FDA-approved drug within the last 20 years. This sole drug, Endari (aka L-Glutamine), doesn’t even target the root cause of the half-moon-shaped red blood cells.

Why has there been no progress to treat such a horrific disease? Is there truly no scientific incentive? We cannot ignore the fact that sickle cell disease predominantly affects African Americans (about 90% of cases) as compared to cystic fibrosis, which mostly affects Caucasian Americans and was originally identified nearly three decades after SCD. We cannot ignore the history of African Americans being mistreated by the biomedical research community; e.g. Henrietta Lacks and the Tuskegee syphilis experimentees. It’s hard not to consider the thought of a purposeful neglect of the sickle cell disease community.

As feelings of biomedical distrust continue to course through minority communities, particularly amongst African Americans, recent reports of CRISPR
Pronounced “crisper.” An adaptive immune system found in bacteria and archaea, co-opted as a genome engineering tool. Acronym of “clustered regularly interspaced short palindromic repeats,” which refers to a section of the host genome containing alternating repetitive sequences and unique snippets of foreign DNA. CRISPR-associated surveillance proteins use these unique sequences as molecular mugshots as they seek out and destroy viral DNA to protect the cell.

> View Definition Page
" style="box-sizing: border-box; transition: color 300ms ease 0s; color: inherit !important; border-bottom: 1px dashed rgb(57, 57, 57) !important;">CRISPR-Cas9
A protein derived from the CRISPR-Cas bacterial immune system that has been co-opted for genome engineering. Uses an RNA molecule as a guide to find a complementary DNA sequence. Once the target DNA is identified, Cas9 cuts both strands. Has been compared to “molecular scissors” or a “genetic scalpel.” In CRISPR immunity, cutting viral DNA prevents it from destroying the host cell. In genome engineering, cutting genomic DNA initiates a repair process that ends up making a change or “edit” to its sequence.

> View Definition Page
" style="box-sizing: border-box; transition: color 300ms ease 0s; color: inherit !important; border-bottom: 1px dashed rgb(57, 57, 57) !important;">Cas9 Genome editing
Intentionally altering the genetic code of a living organism. Can be done with ZFNs, TALENs, or CRISPR. These systems are used to create a double-strand break at a specific DNA site. When the cell repairs the break, the sequence is changed. Can be used to remove, change, or add DNA.

> View Definition Page
" style="box-sizing: border-box; transition: color 300ms ease 0s; color: inherit !important; border-bottom: 1px dashed rgb(57, 57, 57) !important;">genome editing technology may offer a small step towards mending a shattered relationship. Some researchers leading the development of this technology have set their initial focus on sickle cell disease, offering a chance to correct historic mistreatment. Scientists will attempt to use CRISPR to target the root cause of SCD, a single Mutation
A change from one genetic letter (nucleotide) to another. Variation in DNA sequence gives rise to the incredible diversity of species in the world, and even occurs between different organisms of the same species. While some mutations have no consequence at all, certain mutations can directly cause disease. Mutations may be caused by DNA-damaging agents such as UV light or may arise from errors that occur when DNA is copied by cellular enzymes. They can also be made deliberately via genome engineering methods.

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" style="box-sizing: border-box; transition: color 300ms ease 0s; color: inherit !important; border-bottom: 1px dashed rgb(57, 57, 57) !important;">mutationin the entire human Genome
The entire DNA sequence of an organism or virus. The genome is essentially a huge set of instructions for making individual parts of a cell and directing how everything should run.

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" style="box-sizing: border-box; transition: color 300ms ease 0s; color: inherit !important; border-bottom: 1px dashed rgb(57, 57, 57) !important;">genome.

As cofounder of the Minority Coalition for Precision Medicine (MCPM), I’ve come to personally know many incredible scientists directly involved with the development of CRISPR-Cas9 to treat SCD. One of them is Dr. George Church. Genuine interaction and instruction from Dr. Church have played a major role in my personal strengthening of trust towards the scientific community. Through our combined efforts in working with the Personal Genetics Education Program (pgEd) at Harvard Medical School, we have fostered conversations on personal genetics and precision medicine. Open dialogue focused on the past, present, and future of genetics has allowed us to educate cohorts within minority communities throughout the US. As a patient and as a person of faith, I’ve seen the impact of these conversations firsthand. Often, pairing faith-based leaders with acclaimed scientific researchers can improve the impact and acceptance of emerging genetic technologies throughout diverse minority communities.

Our work has only just begun. The Minority Coalition for Precision Medicine will continue the conversation in mid-February 2018, in Berkeley, California with the FREEDOM with CRISPR Conference. Caribou Biosciences, a biotechnology company developing CRISPR-Cas9 for human therapeutics, along with MCPM, is hosting a workshop around the topic of sickle cell disease and other potential applications for genome editing. I encourage others to join in on this conversation. Any interested faith-based and/or community leaders should take this opportunity to rebuild trust between the biomedical and minority communities.
 

ORIGINAL NATION

Rising Star
BGOL Investor
Black Panthers couldn't exist today.

Those fools gave away everything and donated their time.

Didn't know time was money

Gave away free breakfast to kids for free.....If they were really conscious they would have sold them that breakfast.

No wonder they folded, giving away medical treatment for free.

They should have started a gofundme and started a hospital
That could be true what you are saying. Their was a time when the healthier you get the wealthier you get. It was a time when we were as one with nature. And life was more modern then than it is now. And whites did not create the money system their was one here when it was only blacks on the face of the earth. Today we got to overcome this system and it probably was wise to always preserve and grow. I can understand always building the foundation up that way. Kind of like what they criticized the Nation Of Islam about.
Sometimes you got to wonder why is the power with the enemy? Trillions of dollars are spent to destroy humanity. We threw away tons of food while third world countries starved to death. Even today those in the click live like Gods off of the masses backs.
 

playahaitian

Rising Star
Certified Pussy Poster
https://www.redcrossblood.org/info/pennjersey/sickle-cell-donor-program

Sickle Cell Donor Program
Sickle Cell Disease is an inherited blood disorder that causes anemia, lung and tissue damage, strokes and terrible pain.
large_sickle_cell_tag_side_a_2012_v2_0.jpg
It is estimated that over 70,000 Americans have Sickle Cell Disease. 90% of all Sickle Cell Disease patients in the United States occur in people of African descent.

Although there is no cure, Sickle Cell Disease can be managed through blood transfusions. Children with Sickle Cell Disease often receive blood transfusions on an ongoing basis, making it more important for them to receive the best match for their bodies.

To ensure that your blood donation goes to help a Sickle Cell patient, please identify yourself as African American or Black and allow our blood collection staff to place a blue tag on your blood donation. The blue tag will notify our processing lab that this blood donation is designated for the Sickle Cell Donor Program.

If your blood is not a match for the Sickle Cell Donor Program, it is stored until it is needed. If the blood approaches its expiration date and has not been needed by a Sickle Cell patient, it will be used by another patient in need. The American Red Cross strives to ensure every blood donation helps a patient in need.
 

playahaitian

Rising Star
Certified Pussy Poster
https://www.redcrossblood.org/info/pennjersey/sickle-cell-donor-program

Sickle Cell Donor Program
Sickle Cell Disease is an inherited blood disorder that causes anemia, lung and tissue damage, strokes and terrible pain.
large_sickle_cell_tag_side_a_2012_v2_0.jpg
It is estimated that over 70,000 Americans have Sickle Cell Disease. 90% of all Sickle Cell Disease patients in the United States occur in people of African descent.

Although there is no cure, Sickle Cell Disease can be managed through blood transfusions. Children with Sickle Cell Disease often receive blood transfusions on an ongoing basis, making it more important for them to receive the best match for their bodies.

To ensure that your blood donation goes to help a Sickle Cell patient, please identify yourself as African American or Black and allow our blood collection staff to place a blue tag on your blood donation. The blue tag will notify our processing lab that this blood donation is designated for the Sickle Cell Donor Program.

If your blood is not a match for the Sickle Cell Donor Program, it is stored until it is needed. If the blood approaches its expiration date and has not been needed by a Sickle Cell patient, it will be used by another patient in need. The American Red Cross strives to ensure every blood donation helps a patient in need.
 
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