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

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My little girl is hopefully getting out of the hospital tomorrow!

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Please donate and spread the word....


http://www.hematology.org/Foundation/6836.aspx
http://www.ascaa.org/donate-online.php
https://sicklecellfoundation.org/donations/
https://www.sicklecellsociety.org/donate/
https://fscdr.org/
https://www.chop.edu/centers-programs/sickle-cell-center/fight-sickle-cell
https://www.sctpn.net/1viralvoice/donate-now/

Please let me know if she’s had her spleen removed yet? This was an important first step for my youngster in slowing down the crises
 

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https://www.npr.org/podcasts/628529252/the-realness
https://www.wnycstudios.org/shows/realness



Please take a moment today (and every day!) to tweet Governor Andrew Cuomo to approve funding for sickle cell!
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@NYGovCuomo – Fully Fund the Sickle Cell Disease Assembly Bill 5313 and Senate Bill 4054.

Contact him any way you can!!!

Twitter: @NYGovCuomo

Instagram: https://www.instagram.com/nygovcuomo/?hl=en

E Mail: https://www.governor.ny.gov/content/governor-contact-form

Phone: 1-518-474-8390


#fightsickleNY
 
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7 Black Stars Who Suffer From Sickle Cell Anemia

Throughout September, National Sickle Cell Disease Month, we are revisiting articles about the subject. This installment, from June 2018, features celebs with the disorder.

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By

Jessica Bennett
on

September 19, 2019

Monday, June 19, marks World Sickle Cell Day, observed annually to increase awareness and public understanding of the disease that the Centers for Disease Control and Prevention reports affects an estimated 100,000 Americans, including some of our favorite stars of past and present.

Here are seven celebrities who have the disease or suffered from it.

Larenz Tate
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The Love Jones actor is a national spokesman for sickle cell disease awareness, telling WebMD, “It’s really important to know if you carry the disease … If you can prevent the disease, you can really make a difference in someone’s life.”

Tionne ‘T- Boz’ Watkins
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The TLC member has sickle cell anemia and has served as the spokesperson for the Sickle Cell Disease Association of America, according to Biography.

Tiki Barber
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The former NFL baller launched a national health education campaign, Be Sickle Smart, to raise awareness about the disease that disproportionately affects African-Americans.

Prodigy
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Photo Credit: Rap Radar / CBS Radio

The late Mobb Deep MC was diagnosed with sickle cell disease as an infant, according to Rap-Up.

Paul Williams of The Temptations
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Williams suffered from sickle cell anemia, which he would often self-medicate with alcohol when in too much pain to perform, according to U Discover Music.

Miles Davis
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Jazz trumpeter and orchestra leader, Miles Davis models one of his full-length coats, this one lined in fur, 1971. (Moneta Sleet, Jr./Ebony Collection)

The legendary Jazz musician was diagnosed with sickle cell anemia in 1961, according to his biography written by Jennifer Warner.

Santonio Holmes
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Not only does the Super Bowl champ suffer from sickle cell anemia, but his son also carries the trait. This led him to create the III & Long Foundation “to raise awareness to help fight Sickle Cell Disease (SCD) and provide financial support and treatment options for families affected by the disease.”



Learn more about sickle cell anemia here.
 

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Kennedy Cooper Shares Her Inspiring Story of Battling Sickle Cell Disease
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By

Jessica Bennett
on

September 21, 2018
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September is National Sickle Cell Awareness Month, and there’s no better time to share the story of Kennedy Cooper, a precocious girl with sickle cell disease (SCD). In her deeply personal blog for Texas Children’s Hospital, Cooper tells her story of pain and perseverance while educating the masses on the disease that affects so many.

“To put it simply, SCD is a group of inherited disorders where the red blood cells are sickle-shaped and broken down,” she says. “SCD can’t be developed, and it’s not contagious. These cells are inflexible and can easily cause clotting. This can bring pain and complications, like loss of oxygen. To note, sickle cell trait (SCT) is a less aggressive condition in which a child inherits the sickle cell gene mutation from a parent. Those with SCT usually don’t experience SCD symptoms throughout their lifetime. If two parents with SCT have a child, there’s a 50 percent chance their child will have SCT, 25 percent chance for SCD and 25 percent chance of normalcy. I was the first 25 percent chance, and I got SCD.”

Cooper went on to describe how the disease has affected several aspects of her life, including her social life.

“It’s not really fun to take medicine in front of friends at sleepovers. I’ve tried countless techniques to avoid this, including sneaking my medicine bag into the bathroom while others were distracted or waiting until everyone was sleeping (usually around 3 a.m.) to take my medicine. I’ve also had to turn down invitations to countless pool parties because the pool temperature was usually never warm enough for me. When I did go, I was almost always in the hot tub while everyone else played in the pool. When my family moved into a house with a pool of our own, my friends often complained about the water temperature and typically didn’t last more than five minutes in the hot tub. I’m able to shrug this off most of the time, but sometimes you just can’t help but notice how different you are from everybody else.”

There’s also the tremendous physical suffering associated with the disease, with Cooper sharing the story of how a quick dip in the pool resulted in severe arm pain for months.

“We later learned I had something called avascular necrosis (AVN) in my shoulder, which meant bone tissue death from loss of blood.”

Months later, her orthopedic physician diagnosed her with AVN in her hip as well.

“Dr. Scott Rosenfeld, my new doctor, suggested some different treatment options, but we ended up doing a core decompression surgery. I got my crutches a week before the surgery, and I’ve had them ever since. I would be on crutches until my hip significantly regained bone, which I originally thought might take three or four months. Little did I know it would take much, much longer.

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“Now I’m back to school, in seventh grade—still on crutches. People asked me why I was still on crutches, and again, I didn’t really have a good answer. I go to the doctor time and time again, and I keep hearing I’m not ready to walk. Not yet, maybe in a few months. I’m still not ready to walk. Well, I’m ready, but my hip isn’t.”

Regardless, the junior high student remains in high spirits and continues to face her challenges with confidence and strength.

“As a wise person once said: ‘Everyone wants happiness, nobody wants pain, but you can’t have a rainbow without a little rain.’ So when my hip is ready, I’ll be ready. Until then, I guess I’ll just have to be great at everything else.”

If you’re interested in supporting your local SCD community, consider buying a T-shirt from Supporting Our Sicklers (S.O.S.) Parent & Guardian Group. Funds raised will go toward educational programs and assistance initiatives for families in the Greater Houston area. To purchase, click here.
 

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World Sickle Cell Day: Facts About the Inherited Blood Disorder (VIDEO)

Although the world awareness day for the disorders is in June, September has been designated by Congress as Sickle Cell Awareness Month. In recognition of that–and the fact that the disease disproportionately affects African-Americans–we will be reposting articles such as this one from June 2019, throughout the month.


By

Christina Santi
on

September 10, 2019

A decade ago, June 19 was officially appointed as World Sickle Cell Awareness Day. The date was chosen to honor the day the General Assembly of the United Nations began to recognize sickle cell disease (SCD) as a public health concern.

The day is an attempt to increase global awareness and understanding of the disease which affects half a billion people worldwide, according to Dr. Corey Hébert, M.D., EBONY’s medical editor. SCD is frequently known as a “Black” disease, but the Centers for Disease Control and Prevention reports it is common among individuals with sub-Saharan ancestry, in South America, the Caribbean, Central America, Saudi Arabia, India and Mediterranean countries.

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SCD is a group of inherited red blood cell disorders that affects hemoglobin, the molecule in red blood cells that delivers oxygen throughout the body. SCD is a genetic condition that is present at birth. It is inherited when a child receives two sickle cell genes—one from each parent. If only one sickle cell gene is passed on, a child will become a carrier of the sickle cell trait.

Healthy red blood cells are round. However, in a person who has SCD, they become hard and crescent or C-shaped like the “sickle” farm tool. Sickle cells die early, which leads to a shortage of red blood cells. Due to the misshaped form, the sickle cells often get stuck in blood vessels and clog the blood flow, causing chronic pain episodes. These are known as sickle cell crises, they deprive tissues and organs of oxygen-rich blood and can lead to organ damage in the lungs, spleen, kidneys and brain. The most common symptom sickle cell patients report is pain that often lands them in the emergency room. Little can be done to stop the crises, and many people are sent home because the severity of the pain cannot be adequately measured.

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The potentially-fatal genetic disorder affects an estimated 100,000 Africans of all ages and occurs in about 1 out of every 365 Black or African-American births. Although SCD is believed to be an “error of inborn metabolism,” Dr. Hébert says it is actually, “an evolutionary survival mechanism … The gene variant that causes sickle cell disease evolved because it made you resistant to the deadly disease malaria.” Malaria is a life-threatening mosquitoborne blood disease. The parasites from the mosquitoes that cause the disease need a lot of oxygen to reproduce in the red blood cells, and SCD evolved the C-shaped blood cells to stop the parasite’s ability to replicate.

According to a study, about 90 percent of people with SCD live to be at least 20 years old, and more than 50 percent live past the age of 50, but there is no specific life expectancy because the disease and its symptoms affect everyone differently. SCD is a disease that worsens over time.

In modern time, there has been more development in treating and fighting malaria than in addressing SCD. The only cures for SCD are bone marrow or stem cell transplants which are expensive and inaccessible to certain classes of people. There is no national data registry for tracking the condition, and overall less money goes into the comprehensive care treatment for sickle cell disease than other genetic disorders such as hemophilia and cystic fibrosis. Only two medications have been approved to help treat the disease, hydroxyurea (1998) and endari (2017) although SCD was discovered 100 years ago.

There is no single best treatment for all people with SCD. Treatment options are different for each person depending on the symptoms. SCD is passed on because many people do not know their sickle cell trait status before having babies. We can help prevent the spread of SCD by providing genetic counseling before pregnancy and by lobbying our government to get funding for more research into the disease.

Watch the above video to hear Dr. Hébert share the important facts about SCD.

https://www.ebony.com/exclusive/world-sickle-cell-day-facts-inherited-blood-disorder-video/
 

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IMG Models Signs Jourdan Dunn (Exclusive)
2:34 PM PDT 10/17/2019 by Rebecca Sun
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Jourdan Dunn

In addition to walking the runways at New York, Paris and Milan, the British model previously hosted her own YouTube cooking show, 'Well Dunn With Jourdan Dunn.'
Jourdan Dunn has signed with IMG Models, The Hollywood Reporter has exclusively learned.

After the West London native was scouted as a teenager, she soon became a rising star, walking in London, New York, Paris and Milan Fashion Weeks. Dunn has covered i-D,Vogue, Teen Vogue, Italian Vogue and British Vogue. In fact, she was British Vogue's first black cover model (in 2015) and is once again on the cover of its November 2019 issue.

After her son, Riley, was diagnosed with sickle cell anemia, Dunn became an advocate for awareness of the hereditary blood disorder. In 2012, she was one of the first models to launch her own cooking and lifestyle show, Well Dunn With Jourdan Dunn, on Jay-Z's YouTube channel, Life + Times.

IMG Models, an Endeavor company, is one of the world's leading model agencies, with such supermodels as Gisele Bundchen, Gigi and Bella Hadid, Ashley Graham and Karlie Kloss on its roster.

"I am so excited to join IMG and start a new chapter of my career," Dunn said Thursday in a statement. "I am grateful for all that I have accomplished thus far, but I know that I have only just begun. I cannot wait to see what the future holds."

 
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