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New Parents and a Newborn with Sickle Cell Disease: What Now?

NNPA NEWSWIRE — In this article, I’d like to introduce you to TaLana Hughes, a mother of three who is also the executive director of the Sickle Cell Disease Association of Illinois (SCDAI). TaLana has one child with Sickle Cell Disease and two children with the sickle cell trait.

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Ask Dr. Kevin

By Dr. Kevin Williams , Chief Medical Officer for Rare Disease at Pfizer

The “Ask Dr. Kevin” series is brought to you by Pfizer Rare Disease in collaboration with the National Newspaper Publishers Association (NNPA) to increase understanding of sickle cell disease.

Dr. Kevin Williams is the Chief Medical Officer for Rare Disease at Pfizer where he leads a Medical Affairs organization of approximately 150 medical colleagues around the globe. He pursued medicine after being inspired by his father’s work as a general practitioner in his hometown of Baton Rouge, Louisiana. Dr. Kevin is passionate about raising awareness and increasing understanding of rare diseases, such as sickle cell disease, in the African American community.

For the last two years, I’ve been honored to talk with you about sickle cell disease (SCD) through this column, sharing important information and my perspectives as a medical professional. Now, as the “Ask Dr. Kevin” series enters its third year, I wanted to change things a bit by letting you also hear directly from those who matter most—people living with SCD and their caregivers.

In this article, I’d like to introduce you to TaLana Hughes, a mother of three who is also the executive director of the Sickle Cell Disease Association of Illinois (SCDAI). TaLana has one child with SCD and two children with the sickle cell trait.

As TaLana knows from both personal experience and through her work with SCDAI, learning that your child has SCD can feel overwhelming and scary. While family and friends can be an important source of support, they may not always know the best way to help—and parents may find it hard to explain what they need.

In order to help people better understand what it’s like to be a parent of a newborn with SCD, and how family and friends can be most helpful, TaLana and I share our thoughts below on some of the most common questions we’ve been asked about the topic.

What are the biggest fears and challenges parents face upon learning their child has SCD?

TaLana: Immediately after my child received the diagnosis, my husband and I experienced an initial wave of shock and fear. It became suddenly apparent that both of us have the sickle cell trait which we passed down to our child. After the initial shock wore off, a million questions started to run through our minds, and we wondered what this would ultimately mean for our daughter.

Dr. Kevin: I know that for many parents, an SCD diagnosis can certainly be overwhelming, and I see how parents may fear the worst. However, it’s important to know that in recent years we’ve seen advances in understanding and scientific breakthroughs that are potentially paving the way for better care of people with SCD.

I also can’t stress enough to new parents the importance of setting up a healthcare team for their child as soon as possible. Receiving care early and often can help reduce the impacts and complications of the disease. SCD takes a toll on all systems of the body, so having a team made up of a pediatric hematologist, primary care doctor, and other specialists, such as an eye doctor, pulmonologist, cardiologist, and dentist, is key to the health of the child.

What are some tips for helping parents cope with the news?

TaLana: I know that I needed time to digest the news to really understand how the diagnosis would impact our child and family. Once I had a stronger understanding of the disease and how it would manifest over time as my child grew, I started to have a better idea of the support needed from my family and our local community.

Dr. Kevin: I’ve seen incredible connections and support systems form when parents of a child with SCD talk with other parents going through the same thing. There’s a certain comfort that comes from talking to those who have “been there, done that.” Parents can meet other families through local community groups, online platforms like oneSCDvoice*, which includes curated content and a wealth of information for those in the SCD community, and the Sickle Cell Disease Association of America (SCDAA), which publishes a calendar of local SCD events around the country.

How can family and friends offer support?

TaLana: I tell parents of children with SCD to educate their loved ones about the disease and to communicate how it affects your child. Teaching others about the condition gives me the opportunity to explain what kind of specific support I need. It also allows my family and friends to figure out how to best provide support—whether it be a ride to an appointment, a change of clothes for an overnight stay in the hospital, or help with small chores at home.

Dr. Kevin: I also encourage family members and friends to learn as much as they can on their own, because there are still a number of misperceptions about the disease. For example, the belief that a baby born with SCD will die before reaching adulthood. As I mentioned in a previous article, this is a myth! The majority of children with SCD live to adulthood, thanks to advances in SCD care. However, the life expectancy of someone with SCD in the US is only between 40 and 60 years, compared to average US life expectancy of 78.8 years. By understanding the truths about SCD, family and friends are in a better position to provide meaningful support and be allies.

What tools are most helpful for new parents caring for their child with SCD?

TaLana: I always carry a notebook with me so I can take notes and keep track of my child’s “baseline” and SCD history to see how the disease manifests over time. I have an overnight bag in my trunk that includes a change of clothes and snacks. I carry a thermometer in my purse to take my child’s temperature and an incentive spirometer to help facilitate stronger breathing. I’ve also joined a group chat with other parents who have children with SCD, and this has been one of my most important tools for connecting with and learning from other parents who share this experience.

Dr. Kevin: These are great suggestions. I would also encourage parents to connect with their local SCD organization, like an SCDAA local chapter. With a disease like SCD, which is rare in the US and often misunderstood, connecting with others who have similar experiences and challenges is so important for building your support system.

Do infants experience pain crises? What are the warning signs? What is your best advice for new parents when it comes to handling a newborn having a crisis?

TaLana: Yes, infants can have pain crises. However, because they can’t communicate with words and explain any pain they are experiencing, recognizing pain crises can be difficult. In my own experience, the first warning signs are usually dactylitis, where the hands and feet begin to swell, and a fever. However, because new parents usually pay attention to anything out of the ordinary seen in their newborn, they often are able to notice how their own child displays warning signs.

When it comes to noticing something out of the ordinary in my child, I always play it safe. I also find it really beneficial to speak with other parents with children who have SCD and to learn about what they see in their own children and discuss how they’ve handled episodes of pain.

Dr. Kevin: It’s also important for parents to understand that pain crises are unfortunately a universal experience for people with SCD. Crises typically manifest in infants aged six months and older, and they are often unpredictable and can occur up to several times a year. So, to TaLana’s point, learning to recognize what a pain crisis looks like in their child will help parents know when to seek help.

What do babysitters or other caregivers need to know?

TaLana: I make sure other caregivers and babysitters know about my child’s personal regimens and what to do in case of an emergency. I share important pointers, like to make sure my child is hydrated and never around smoke, which can increase the risk of Acute Chest Syndrome (ACS), a bout of pneumonia or a serious lung condition due to the sickling of red blood cells, in people with SCD.

Lastly, I make sure they know how special my child is and all the wonderful qualities she has. I tell them her likes and dislikes, hobbies and interests, and what makes her laugh. Having SCD may be a normal part of my child’s life, but I make sure she is not defined by her condition.

Dr. Kevin: I agree wholeheartedly. Children with SCD are children first and foremost. While the disease affects them, it certainly does not define them—nor should SCD or any disease define the person who has it.

For more information about parenting a child with SCD, check out “A Parents Handbook for Sickle Cell Disease” and the CDC’s “5 Facts You Should Know about SCD.”

Keep up to date on Pfizer’s SCD efforts by visiting our page here. You can also follow Pfizer on Facebook and Twitter.

*Supported by Pfizer

About Dr. Kevin Williams

Dr. Kevin Williams is the Chief Medical Officer (CMO) for Pfizer Rare Disease. In this role, he leads a Medical Affairs organization of approximately 150 medical colleagues around the globe supporting Pfizer’s efforts and portfolio in Rare Disease. Dr. Kevin joined Pfizer in January 2004 as a Director of Regional Medical & Research Specialist working in the HIV disease area. After moving into a Team Leader position in July 2005, he served in various leadership roles during his career at Pfizer. Dr. Kevin moved into his current Rare Disease CMO position in May 2016.

Dr. Kevin received his medical degree from the UCLA School of Medicine and is board certified in Internal Medicine. Following a 2-year fellowship in Health Services Research at UCLA and a brief academic career as an Instructor of Medicine at the UCLA School of Medicine, he spent     8 years in private practice caring for HIV-positive patients while maintaining an academic appointment at the UCLA School of Medicine as an Assistant Clinical Professor of Medicine. In addition to his medical degree, Dr. Kevin has a Master’s in Public Health from the UCLA School of Public Health and a Juris Doctorate from Harvard Law School.

#NNPA BlackPress

Brittney Griner Sentenced to More than 9 years in Russian Prison

NNPA NEWSWIRE — The lawyers of WNBA star Brittney Griner, Maria Blagovolina and Alexander Boykov, said in a written statement following the verdict announcement that the court ignored all the evidence they presented and that they will appeal the decision. “We are very disappointed by the verdict. As legal professionals, we believe that the court should be fair to everyone regardless of nationality,” Attorneys Maria Blagovolina and Alexander Boykov said in a statement.

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By Stacy M. Brown, NNPA Newswire Senior National Correspondent
@StacyBrownMedia

WNBA Superstar Brittney Griner has been sentenced to more than 9 years in a Russian prison following her conviction on drug charges.

Her lawyers called the verdict a disappointment and vowed to appeal.

The lawyers of WNBA star Brittney Griner, Maria Blagovolina and Alexander Boykov, said in a written statement following the verdict announcement that the court ignored all the evidence they presented and that they will appeal the decision.

“We are very disappointed by the verdict. As legal professionals, we believe that the court should be fair to everyone regardless of nationality,” Attorneys Maria Blagovolina and Alexander Boykov said in a statement.

“The court completely ignored all the evidence of the defense, and most importantly, the guilty plea. This contradicts the existing legal practice.

“Taking into account the amount of the substance (not to mention the defects of the expertise) and the plea, the verdict is absolutely unreasonable. We will certainly file an appeal,” they added.

Russian officials contended that Griner committed the crime on purpose. They also levied a fine totaling about $16,400 American dollars on the basketball star.

Authorities arrested Griner on Feb. 17 at an airport in Moscow after finding less than a gram of cannabis oil in her luggage.

She has been detained since then.

Recently, American officials revealed that the Biden-Harris administration had offered notorious arms dealer Viktor Bout in exchange for the release of Griner and Paul Whelan.

“Today, American citizen Brittney Griner received a prison sentence that is one more reminder of what the world already knew: Russia is wrongfully detaining Brittney,” President Biden said.

“It’s unacceptable, and I call on Russia to release her immediately so she can be with her wife, loved ones, friends, and teammates. My administration will continue to work tirelessly and pursue every possible avenue to bring Brittney and Paul Whelan home safely as soon as possible.”

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Report: Human Rights Violations in Prisons Throughout Southern United States Cause Disparate and Lasting Harm in Black Communities  

NNPA NEWSWIRE — “The U.S. has long failed to live up to its international human rights treaty obligations on eliminating racial discrimination, perhaps more so in the area of mass incarceration and prison conditions than in any other context,” said Lisa Borden, Senior Policy Counsel, International Advocacy at the Southern Poverty Law Center. 

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NNPA Newswire

NEW YORK – The Southern Prisons Coalition, a group of civil and human rights organizations, submitted a new report to the United Nations Committee on the Elimination of All Forms of Racial Discrimination on the devastating consequences of incarceration on Black people throughout the southern United States.

With the long-term goal of eliminating all forms of racial discrimination in the criminal legal system, including the carceral system, the report describes the widespread, disparate harms resulting from the arrests, harsh prison sentences, and incarceration on Black communities.

The report also cites the devastating impacts of solitary confinement, prison labor, the school to prison pipeline, and incarceration of parents on Black families.

On August 8, 2022, the UN will review the United States’ compliance with the International Convention on the Elimination of All Forms of Racial Discrimination for the first time since 2014.

Among the ongoing stark racial disparities throughout prisons in the southern United States, Black people are five times more likely to be incarcerated in state prisons.

In states like Alabama, Arkansas, Florida, Georgia, Louisiana, Mississippi, North Carolina, South Carolina, and Texas, where Black communities comprise 38% of the total population, Black individuals account for as much as 67% of the total incarcerated population.

While incarcerated, Black people are more than eight times more likely to be placed in solitary confinement, and they are 10 times more likely to be held there for exceedingly long periods of time.

By submitting the report to the United Nations, the Southern Prisons Coalition hopes to solicit concrete recommendations from the UN Committee as well as commitments from the United States delegation about their plans to address systemic issues in the United States prison system, particularly in the South.

According to the report, several states in the United States have also failed to meet several of the UN’s Standard Minimum Rules for the treatment of incarcerated people, including:

  • Work should help to prepare incarcerated people for their release from prison, including life and job skills;
  • Safety measures and labor protections for incarcerated workers should be the same as those that cover workers who are not incarcerated;
  • Incarcerated workers should receive equitable pay, be able to send money home to their families, and have a portion of their wages set aside to be given to them upon release.

“The U.S. has long failed to live up to its international human rights treaty obligations on eliminating racial discrimination, perhaps more so in the area of mass incarceration and prison conditions than in any other context,” said Lisa Borden, Senior Policy Counsel, International Advocacy at the Southern Poverty Law Center.

“We hope the Committee will help to shine a light on these very dark truths and prompt the U.S. to take its obligation to make significant improvements more seriously.”

“The abuses of forced labor are inextricably tied to racial discrimination in our nation,” said Jamila Johnson, Deputy Director at the Promise of Justice Initiative.

“In Louisiana, for instance, people are still sent into the fields to labor by hand in dangerously high heat indexes, for little to no compensation, and with brutal enforcement reminiscent of slavery and the era of ‘convict leasing’.”

“This report reveals the suffering of Black people in southern U.S. prisons, whose stories of marginalization and discrimination echo the racial subjugation of slavery and convict leasing during our country’s most shameful past,” said Antonio L. Ingram II, Assistant Counsel at the Legal Defense Fund.

“Despite widespread knowledge of the longstanding racial inequalities in the criminal legal and carceral systems, the United States continues to allow egregious human rights violations to persist for Black incarcerated people in violation of international law. This report serves as a sobering reminder of how far we need to go.”

Read the full report here.

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Celebrate your birthday with 10 free items

NNPA NEWSWIRE — Is your birthday coming up, and you’re not sure how to celebrate? Beat the summer heat by grabbing free ice cream at Cold Stone Creamery, or a daiquiri at WhoDaq Daquiris “The Daiquiri Shoppe.” Not in the mood for sweets? Head over to Jersey Mike’s or McDonald’s. Check out the rest of these Top 10 places giving out free items on your special day.

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By Angelina Liu, Entertainment Editor of The Trendsetter / Texas Metro News

Is your birthday coming up, and you’re not sure how to celebrate? Beat the summer heat by grabbing free ice cream at Cold Stone Creamery, or a daiquiri at WhoDaq Daquiris “The Daiquiri Shoppe.” Not in the mood for sweets? Head over to Jersey Mike’s or McDonald’s. Check out the rest of these Top 10 places giving out free items on your special day.

1. Chocolate Secrets

At Chocolate Secrets, located at 3926 Oak Lawn Ave, Dallas, TX 75219, you can celebrate your birthday by getting one free piece of candy under their candy cases.

2. WhoDaq Daquiris “The Daiquiri Shoppe”

Head to WhoDaq Daquiris “The Daiquiri Shoppe”, located at 684 W Pioneer Pkwy Suite 100, Grand Prairie, Texas 75051, to claim a free small personal daiquiri on your birthday. Quench your thirst with signature flavors such as “Strawberry Shortcake” or “Bahama Mama.”

3. Sephora

Sign up for a free, Beauty Insider account and receive your choice of 250 bonus points, Laura Mercier, Amika or Tatcha sets on your birthday. The choice of powders, lipsticks and skincare is bound to make you look fabulous for your special day.

4. Starbucks

Need a quick pick-me-up on your birthday? Starbucks has it covered! Join the Starbucks Rewards Program seven days prior to your birthday and make one purchase. Starbucks will then email you a coupon for a free food or beverage item two days before your birthday. The birthday reward qualifies for anything on the menu, including any size handcrafted drink or food item.

5. Jersey Mike’s

In the mood for a sub? Head over to Jersey Mike’s and receive a free sub and drink. Make sure to sign up for the Jersey Mike’s Subs Email Club prior to your birthday to receive this reward. Nothing tastes quite like melted cheese and meat in between a toasted baguette, along with an icy cold drink.

6. The Cheesecake Factory

Celebrating with friends? Tell your server it’s your birthday and receive a free treat as well as a song. It may be mildly embarrassing, but hey, it’s free!

7. Culver’s

Need something cold and sweet to beat the Texas heat? Head to Culver’s for a free sundae when you sign up for their rewards program. The sweet creaminess will surely not disappoint.

8. IHOP

Want to indulge in a sweet breakfast before birthday festivities? Join the International Bank of Pancakes rewards program to receive a free stack of pancakes on your birthday. Pair your pancakes with a choice of chocolate chips, syrup, fresh fruit or a dollop of whipped cream.

9. McDonald’s

Need a snack before embarking on your next birthday adventure? Download the McDonald’s app and join MyMcDonald’s Rewards to receive free large fries. Mmm, the taste and smell of fresh, perfectly salted french fries.

10. Smoothie King

Want to celebrate your birthday with a healthier option? Enjoy a birthday smoothie at Smoothie King. Download the Smoothie King app to receive this offer.

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