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Dedicated thread on Sickle Cell Awareness: September is Awareness MONTH!!!

playahaitian

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I cannot believe this.

damn damn damn...

I was JUST talking about Prodigy because...

My brand new baby girl was recently diagnosed with sickle cell disease...been tough.

but I've been getting a lot support especially with others on the board going through the same thing.

gonna make a dedicated thread with info advice and help.

Condolences to his family and friends.



https://www.cdc.gov/ncbddd/sicklecell/index.html
http://www.sicklecellsociety.org/wp-content/uploads/2015/10/Lets-Talk-About-Sickle-Cell.pdf

 
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playahaitian

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http://www.essence.com/culture/mobb-deeps-prodigy-rap-legacy-sickle-cell-awareness

From Hip-Hop To Sickle Cell Awareness, Prodigy's Legacy Is Two-Fold

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Photo by Scott Dudelson


By Feminista Jones
Jun, 21, 2017
Prodigy will remain a respected griot of rap culture. But examining the pain he lived with through sickle cell is an indictment on the medical world.




The hip-hop world mourns the loss of one of our most philosophical emcees, a cultural exemplar gone entirely too soon, Albert “Prodigy” Johnson.





One half of the New York City-based group, The Infamous Mobb Deep, Prodigy reportedly died due to complications from Sickle Cell Disease, which affects approximately 70,000-100,000 Americans. From humble beginnings as The Source’s “Unsigned Hype” in 1992, to leaving a diverse audience shook at The Roots Picnic in Philadelphia twenty-five years later, Prodigy will always be remembered as the prolific ‘poetical prophet’ who made us feel a connection to life’s underworld.



RELATED: Rappers, Celebrities Mourn The Loss Of Mobb Deep's Prodigy









Prodigy on His Mom’s Macaroni Salad and Cooking in Prison
Prodigy of Mobb Deep recounts his time cooking in prison and writing his "Kitchen Commissary" cookbook.







As hip-hop culture ages, so do the people who have aided in sustaining its core integrity and who remain examples of why we must fight to protect our culture at all costs. We expect growth, maturity, and a few grey hairs when we see some of the ‘greats’ perform music from their hey days, which may have been over 20 years ago. But when they die at ages 24, 33, and 42, we pause — shocked by the unexpected loss — and we grieve along with their families and the close friends who knew them best.



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What does this mean for the rest of us who were born and raised in this culture? And what can we do to make sure legacies are preserved and stories aren’t erased or lost?





“I’m not scared to die… I feel like my life is gonna be short anyway because of my Sickle Cell,” he told The Village Voice in 2008. After agreeing to a plea deal on a gun charge, refusing to snitch on rapper 50 Cent, who was, at the time, being targeted by New York City police, Prodigy was headed to jail. He knew, then, that his time on Earth was limited. Not only did he want to make sure his family was provided for, he also wanted to craft an enduring legacy that would guide those up-and-coming artists who would come after him.





Born in Hempstead, New York into a musical family, Prodigy’s fate was inscribed into a worn black-and-white composition book — he was going to be a legend. In the late 1980s and early 1990s, a lot of artists did uncredited work for that unspoken exposure, but didn’t exactly know who they were. Before linking up with Kejuan “Havoc” Muchita in high school, Prodigy dropped a few gems of his own, helping to create a style that uniquely became associated with the Queensbridge section of New York City, home to Havoc and master emcee, Nas.





The Bridge wasn’t over—it was dark, dangerous, and a spirit-shaking place to find oneself as a young Black man in New York City. Prodigy, with courageous grit, created a safer space for brothers with depression and suicidal ideation to express it, hoping someone would hear them and receive their pain.














“As a young black teen, every day I, deal
With the pressure and mixed up is how I feel
I walk the streets with a f**k you attitude
And when it comes to my peoples you ain't half as rude
Follow the crowd or be a leader, take your pick
Now I'm smokin’ buddha Philly blunt style
A frustrated and confused young juvenile
King of the project blues so I choose
To take a piece of the action
But my sober state of mind won't let it happen
So twenty-four-seven it's the number one stressor
Dealin with the peer pressure”






“Peer Pressure”, 1993





With Havoc on the boards and Prodigy taking lead on the mic, Mobb Deep’s greatest gift to hip-hop culture was the unflinching portrayal of the impact of living in urban warzones on one’s self-identification and paradigms. And though they refused to compromise on their sound, opting out of the party-and-bullshit escapism of some of their peers, Mobb Deep still gave us some of the most important hip-hop anthems that every killer and hundred-dollar-biller could raise a bottle of Hennessey and two-step to. Prodigy was as much your cousin who did a three-year bid and came home to a celebratory cookout, as he was your respected griot who shared lessons scrawled on the tattered pages of his spiral-edged notepad.





He didn’t just rap about gangsters, he sipped cognac with them. And when he shared his experiences, he crafted narratives that lyrically left little room for hope, but were encouraging nonetheless.





“Yeah, this hurts.”





Dina Valentin, a 34-year-old documentary filmmaker from The Bronx who lives with Sickle Cell Disease, is struggling with the news of Prodigy’s death. Prodigy, who was open about living with the disease and regularly made reference to it in his songs and interviews, finally succumbed to the painful blood disorder in Las Vegas, Nevada.





“I have Sickle cell disease,” she shared via email. “Growing up, the people who came out about having Sickle Cell were Prodigy and T-Boz (of popular R&B group, TLC). I looked up to them immensely. Federal Funding to Sickle Cell Disease is so low compared to the amount of people affected. We're literally dying out here.”





Foundations like The William E. Proudford Sickle Cell Fund, Inc. seek to raise awareness and improve education and research to find a cure for Sickle Cell Disease. Projected fiscal year 2017 spending is approximately $92 million, or $920 per person living with the disease — not nearly enough for a disease that primarily affects African-Americans and other members of the African Diaspora.





Dina urges us to listen to the poignant track, "You Can Never Feel My Pain,” which she used as the introduction to her documentary on living with Sickle Cell Disease Feel My Pain, entitled as an ode to Prodigy.





“I’m talkin bout permanent, physical sufferin’
You know nothin’ about that
You just complain cause you stressed
Nigga, my pain's in the flesh
And through the years that pain became my friend; sedated
With morphine as a little kid
I built a tolerance for drugs, addicted to the medicine
Now hospital emergency treat me like a fiend
I rather die sometimes I wish a nigga O.D
Beggin' God for help, only to find
That I'm all by my God damn self
Ay you can never feel my pain nigga”






“You Can Never Feel My Pain”, 2000

The Author & Educator





Not only was Prodigy a game-changing emcee, he was also an author and educator. Commissary Kitchen: My Infamous Cookbook (2016), written with journalist Kathy Iandoli, does more than provide interesting recipes using only foods found in prison commissaries—the book addresses nutritional apartheid and food insecurity within our nation’s prisons. Because people living with Sickle Cell Disease have to be hyper-vigilant about the food they eat, he wrote about how difficult it was to maintain a diet conducive to promoting his health. One can only speculate about how the long-term effects of being imprisoned while living with Sickle Cell and lacking access to nutritious food had on Prodigy’s overall health.





And with his final album, the political and spiritual project, “The Hegelian Dialectic,” Prodigy seemed to turn a corner into a consciousness that we hope to see happen more often among Black artists, particularly hip-hop artists: He became a teacherwho sought to use what he’d learned throughout his life to enlighten his fans. Ryan R. Smith, a Philadelphia educator who teaches rap artists like Prodigy and Immortal Technique to his eager high school students, shared this via email:





“Naming the album ‘The Hegelian Dialectic’ was an act of defiance itself. Here was a rapper, who was at one point a champion of the proverbial girls, glitz, and hood strife, finally speaking truth to power. Inspired by the work of 19th century German philosopher, Georg Hegel, he was upsetting the apple cart by informing the hood about the real finesse game—the subtle, pernicious abuse of power that us used throughout the world. [Prodigy] was ‘woke’ to the omnipresent reality that poses a real threat to our very existence.”





Talented. Clever. Multifaceted. Raw. Essential. Prodigy’s early departure reminds us that we often lose sight of the importance of supporting our artistic treasures while they are still with us. We, lovers of hip-hop culture, have a unique obligation to safeguard it from the vultures and detractors who steal our style while diluting our integrity. Prodigy was as real as it gets, and we can all stand to revisit Mobb Deep’s catalog to reacquaint ourselves with why hip-hop emerged as the voice of our forgotten people.





“If 'Pac was still alive we be on the same team” – Prodigy, “The Rotten Apple,” 2007
 

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http://www.hematology.org/Advocacy/Policy-News/2011/938.aspx

September is National Sickle Cell Awareness Month
Published on: September 13, 2011

Congress has designated September as “National Sickle Cell Awareness Month” to help focus attention on the need for research and treatment of sickle cell disease, an inherited condition that currently affects 70,000-100,000 Americans.

Sickle cell disease occurs when hemoglobin, a protein carried by the body’s red blood cells that attaches to oxygen in the lungs and transports it to all parts of the body, is abnormal, causing the red blood cells to take on a rigid “C” or sickle, shape. Sickle cells can get stuck and block blood flow, causing pain and infections. Complications of sickle cell disease are a result of sickle cells blocking blood flow to specific organs, and include stroke, acute chest syndrome (a condition that lowers the level of oxygen in the blood), organ damage, and blindness.

ASH continues to work with Congress, the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), and other federal agencies to increase research, treatment options, and access to care for patients with this serious disease. ASH has developed a sickle cell working group to help identify ways the Society can support federal programs and enhance the Society’s advocacy efforts to improve research and treatment. To learn more about federal sickle cell research opportunities, programs, and resources, visit the National Heart, Lung, and Blood Institute (NHLBI) website and the CDC website.

ASH is also committed to supporting practitioners who care for those with sickle cell disease. ASH will be hosting a free webinar on Stroke, Renal Disease, and Treatment with Hydroxyurea in Adults with Sickle Cell Disease on October 26.

In addition to its strategic partnerships with Congress, NIH, CDC, and other federal agencies to combat sickle cell disease, ASH offers a host of information and multimedia on its sickle cell patient resource page, including a video chronicling a real patient’s journey with sickle cell anemia. Access this page to find general information about sickle cell risk factors, signs and symptoms, treatment options, and links to organizations that inform and support sickle cell patients and their families.
 

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5 fast facts about Sickle Cell Awareness Month
SHARELLE BURT
NEW YORK DAILY NEWS
Tuesday, September 8, 2015, 2:42 PM

Although some diseases are easy to identify and diagnose, others can remain hidden for a long time before they cause any symptoms.

One of those little-known ailments, sickle-cell disease — a disorder that causes abnormal shapes of the red blood cells — can be potentially deadly if not treated.

The month of September has been devoted to raise awareness for the estimatted 100,000 Americans living with the disease.

Here are five facts about the disease that you may not know:

1. Sickle cell disease is a hereditary blood disorder that can cause severe pain and result in damage to the brain and other vital organs like the kidneys, liver, spleen and heart.

People who have the disease, but don’t experience the symptoms are said to have the sickle-cell trait.

1. Since Sickle-Cell Awareness Month was created in 1983, every child born in the U.S. is screened for the disease — so that those diagnosed can begin treatment right away.

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3. The only known cure for sickle-cell disease is through a transplant of bone marrow or stem cells.

4. SCD is most common in Africans and African-Americans, but the disease can be also found in other demographics — primarily in South and Central America, the Caribbean, Mediterranean countries and India.

About 1 in 12 African-Americans are diagnosed with the trait.

5. The most basic symptoms are fatigue, shortness of breath and episodes of serious pain that will likely require hospitalization.

These symptoms will begin to show within the very first year of a person's life if they have the disease. The pain ranges from mild to very severe.

To stay informed or learn more about the disease, visit www.sicklecelldisease.org
 

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Teenager's sickle cell reversed with world-first therapy
By James Gallagher

Health and science reporter, BBC News website
2 March 2017

From the section Health These are external links and will open in a new window Share this with Facebook Share this with Twitter Share this with Messenger Share this with Email Share
Sickle cellImage copyrightSPL
Image caption

Healthy red blood cells are round, but the genetic defect makes them sickle shaped

A French teenager's sickle cell disease has been reversed using a pioneering treatment to change his DNA.

The world-first procedure at Necker Children's Hospital in Paris offers hope to millions of people with the blood disorder.

Scientists altered the genetic instructions in his bone marrow so it made healthy red blood cells.

So far, the therapy has worked for 15 months and the child is no longer on any medication.

Sickle cell disease causes normally round red blood cells, which carry oxygen around the body, to become shaped like a sickle.

These deformed cells can lock together to block the flow of blood around the body. This can cause intense pain, organ damage and can be fatal.

The teenager who received the treatment had so much internal damage he needed to have his spleen removed and his hips replaced.

Every month he had to go into hospital to have a blood transfusion to dilute his defective blood.

But when he was 13, doctors at the Necker Children's Hospital in Paris did something unique.
'No sign of disease'

Doctors removed his bone marrow - the part of the body that makes blood. They then genetically altered it in a lab to compensate for the defect in his DNA that caused the disease.

Sickle cell is caused by a typo in the instructions for making the protein haemoglobin, which is densely packed into red blood cells.

A virus was used to infect the bone marrow with new, correct instructions.

The corrected bone marrow was then put back into the patient.

The results in the New England Journal of Medicine showed the teenager has been making normal blood since the procedure 15 months ago.

Philippe Leboulch, a professor of medicine at the University of Paris, told the BBC News website: "So far the patient has no sign of the disease, no pain, no hospitalisation. He no longer requires a transfusion so we are quite pleased with that.

"But of course we need to perform the same therapy in many patients to feel confident that it is robust enough to propose it as a mainstream therapy."

'Given his life back'

Prof Leboulch is nervous about using the word "cure" as this is just the first patient to come through clinical trials.

But the study does show the potential power of gene therapy to transform the lives of people with sickle cell.

"I think it's very significant, essential they've given him his life back," said Dr Deborah Gill from the gene medicine research group at the University of Oxford.

She told the BBC: "I've worked in gene therapy for a long time and we make small steps and know there's years more work.

"But here you have someone who has received gene therapy and has complete clinical remission - that's a huge step forward."

However, the expensive procedure can only be carried out in cutting-edge hospitals and laboratories, while most sickle cell patients are in Africa.

The next big challenge will be to transform this pioneering science into something that really can help millions of people.

Follow James on Twitter.

A normal red blood cell next to a sickle cellImage copyrightSCIENCE PHOTO LIBRARY

What is sickle cell disease?

Sickle cell disease is a lifelong condition caused by a faulty gene that affects how red blood cells develop

SCD mainly affects people of African, Caribbean, Middle Eastern, Eastern Mediterranean and Asian origin

People with sickle cell are often at an increased risk of contracting serious infections or they could become anaemic, which is when red blood cells cannot carry enough oxygen around the body. This can cause tiredness and shortness of breath

Some patients have regular blood transfusions - usually every three to four weeks - as a form of treatment for the condition

Source: NHS Choices

http://www.bbc.com/news/health-39142971
 
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playahaitian

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NHLBI Sickle Cell Resources


September is National Sickle Cell Awareness Month. First officially recognized by the federal government in 1983, National Sickle Cell Awareness Month calls attention to sickle cell disease (SCD), a genetic disease that researchers estimate affects between 90,000 and 100,000 Americans.

Below you can access information on sickle cell disease, including details about ongoing clinical trials, recent research findings, and treatment options.


https://www.nhlbi.nih.gov/health/educational/sickle-cell-awareness
 
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http://buffalonews.com/2017/06/20/another-voice-attention-needs-paid-sickle-cell-disease/

Another Voice: More attention needs to be paid to sickle cell disease

  • By Betty W. Carrington

As Congress continues to debate health care insurance coverage formats, great concern is felt by individuals and families impacted by sickle cell disease, an inherited blood disorder that is serious in nature and life-shortening. Identified in 1910 by Chicago physician James B. Herrick, who first published a description of sickled cells in a blood sample from a 20-year-old dental student, the term “sickle cell anemia” was coined.

It is a pre-existing condition that was covered under the Affordable Care Act. Now, debate has been heard about whether pre-existing conditions should be covered, and if so, which ones, and should states be allowed to determine that coverage. Changes are also being discussed about Medicaid and how that should be reduced.

Sickle cell disease is the result of one abnormal gene from each parent, which results in the protein hemoglobin, the substance causing the red color in red blood cells, to go through a chemical process resulting in change from a round red cell into the shape of a sickle.

While the body, specifically the spleen, struggles to produce needed red blood cells, those that are sickle-shaped break down in 18 to 20 days, whereas normal red blood cells remain about 120 days. Most importantly, sickled cells aggregate in the blood vessels, blocking the flow of blood and oxygen delivery to all parts of the body.

The significance is that normal red blood cells take oxygen to all organs and parts of the body. Without oxygen, organs are damaged and disabilities occur beginning with early childhood, including infections, strokes, joint pain and destruction, blindness, kidney failure, acute chest syndrome and constant anemia. Persons so affected suffer painful crises that often necessitate days to weeks of hospitalization. The crises can often interfere with education, work and lifelong plans.

Sickle cell disorders vary in type and severity and are a global issue, affecting primarily people of color. Why is it that since 1910, only one medication has been studied and is in use to reduce the cascade of destructive events during a sickle cell crisis? Why is it that hydroxyurea is the only medication that is available that keeps red blood cells round and increases fetal hemoglobin, which everyone has at some low level since birth? Why is there a paucity of research to find new medications and even a universal cure for sickle cell disease?

Why is it that care for children in hospital pediatric units is available but appropriate care for persons who have aged out of pediatric care must be sought by the individual and is hard to locate? Why is it that sickle cell disease is underresearched, underfunded for hospital care and poorly supported by the general community?

June 19 of every year was declared World Sickle Cell Disease Day by the United Nations in 2008. It is time for this inherited and pre-existing condition to be adequately supported by the general community and any federal health plan developed by Congress.

Betty W. Carrington is second vice president of the Queens Sickle Cell Advocacy Network.

http://buffalonews.com/2017/06/20/another-voice-attention-needs-paid-sickle-cell-disease/
 

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Queens Sickle Cell Advocacy Network, Inc.
Organizer of MOUNT SINAI HOSPITAL AND THE QUEENS SICKLE CELL ADVOCACY NETWORK - CELEBRATE WORLD SICKLE CELL DAY







The Queens Sickle Cell Advocacy Network, Inc. is a not-for-profit, broad based community organization, servicing children and families with Sickle Cell Diseases, Thalassemia and the trait.

Our mission and vision are a deep sense of commitment; it focuses on those with Sickle Cell conditions. We provide a clear sense of direction for families and individuals, enabling them to participate actively in their surrounding communities and health care needs. All our information and services are provided FREE of charge. We rely on private donations and support that allows QSCAN to provide the needed services to those families and individuals we serve.

Our Goals, Services, and Objectives We Provide Are as Follows:

  • SICKLE CELL INFORMATION REFERRAL CENTER
  • COMMUNITY OUTREACH EDUCATION AND AWARENESS
  • FAMILY OR INDIVIDUAL CONSULTATION & COUNSELING
  • PARENT SUPPORT GROUP
  • SICKLE CELL YOUTH ADVISORY COUNCIL
  • SICKLE CELL FAMILY SUPPORT SERVICES
  • HOSPITAL/HOME VISITS
  • FAMILY FINANCIAL ASSISTANCE
  • HELP US TO SPONSOR A CHILD FOR CAMP
  • QSCAN SCHOLARSHIP AWARD
Our annual scholarship is awarded to individuals affected with Sickle Cell Disease who, in spite of the challenges they face, are determined to achieve their academic goals in college.

Make a generous tax deductible donation to our scholarship fund via paypal.com using our qscanorg@verizon.net email, or go to http://www.qscan.org/become-a-sponsor/donate-now/.

With us working together, we can make a difference in the lives of those suffering with this debilitating disease.

Get tested now for the Sickle Cell Trait!!

http://www.qscan.org/

https://www.nycservice.org/organizations/index.php?org_id=2652
 

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BONE MARROW Drive Details - ASA College


Recruitment Center: The Icla da Silva Foundation, Inc.
Telephone Number: (201) 780-8555 Ext. xsi:
Drive Name: ASA College
Drive Location: ASA College
Address: 1293 Broadway
Room 301
New York , NY 10002
Drive Date(s): Jun 26, 2017
Drive Time: 1:00 PM - 2:00 PM
 

cocobeauty

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Great thread. I know so many people that suffers from Sickle cell and it's one of the hardest things to see.

One of my daughters friend has a little girl that by the time she was 4 she had suffered 5 strokes. They told her at any moment a stroke could kill her. She did the bone marrow transplant and she's so much better now, but it has been a long road traveled at such a young age. She's not even 10 yet.
 

TheBigOne

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Thanks so much for this thread. It ought to be stickied every so often. I have the trait, passed it on to my son, who met a girl who also has it and they produced the apple of my eye, my grandson. At about 3 months, he started to have crises. We thought he was gone about 20 times up to the age of 2. We live near Johns Hopkins Medical. A hematologist who had studied SCD in Kingston, Jamaica insisted that we have his spleen removed. So, he has no organ that produces red blood cells, but also no place for the sickled cells to aggregate and cause a crisis. He gets a pneumococcal shot every two years and penicillin daily to reduce the threat of infection. But, they introduced him into Infusion Therapy. He gets a transfusion that basically replaces 80% of his blood every 25-30 days. He is 19 and just finished his freshman year in college. He seldom has severe pain (knock on wood), but takes a drug to reduce iron build up caused by the transfusions. Otherwise, he's a normal kid that tends to get a little tired if he exerts himself. My son works for the government and has top of the line insurance. And, Hopkins Pediatric is 25 minutes from my house and an hour from his dorm. I cannot imagine him surviving without the care he has had via the ability to pay with our insurance. When he is getting close to transfusion time, he tends to get priapism (dick hard all the time), but he's a bit tired so girlfriend has to ride him. BTW, I can see how the vampire legend started among Mediterranean peoples. When he gets transfused, he has super energy for the first 15 days or so.
 

Complex

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I remember being tested for this when I was young, but honestly had no idea what it was

I don't think I learned what it was until T-Boz and Prodigy, and didn't realize how painful and dangerous it was until Prodigy's book

RIP
 

donhustle

Rising Star
BGOL Investor
My niece had a bone marrow transplant a year ago and is doing great.She had crises like every 3 months and was hospitalized probably an 1/3rd of her life.
I
 
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