Connect with us

#NNPA BlackPress

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.

Published

on

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.

Continue Reading
4 Comments

4 Comments

Leave a Reply

Your email address will not be published. Required fields are marked *

#NNPA BlackPress

A Nation in Freefall While the Powerful Feast: Trump Calls Affordability a ‘Con Job’

BLACKPRESSUSA NEWSWIRE — There are seasons in this country when the struggle of ordinary Americans is not merely a condition but a kind of weather that settles over everything.

Published

on

By Stacy M. Brown
Black Press USA Senior National Correspondent

There are seasons in this country when the struggle of ordinary Americans is not merely a condition but a kind of weather that settles over everything. It enters the grocery aisle, the overdue bill, the rent notice, and the long nights spent calculating how to get through the next week. The latest numbers show that this season has not passed. It has deepened.

Private employers cut 32,000 jobs in November, according to ADP. Because the nation has been hemorrhaging jobs since President Trump took office, the administration has halted publishing the traditional monthly report. The ADP report revealed that small businesses suffered the heaviest losses. Establishments with fewer than 50 workers shed 120,000 positions, including 74,000 from companies with 20 to 49 workers. Larger firms added 90,000 jobs, widening the split between those rising and those falling.

Meanwhile, wealth continues to climb for the few who already possess most of it. Federal Reserve data shows the top 1 percent now holds $52 trillion. The top 10 percent added $5 trillion in the second quarter alone. The bottom half gained only 6 percent over the past year, a number so small it fades beside the towering fortunes above it.

“Less educated and poorer people tend to make worse mistakes,” John Campbell said to CBS News, while noting that the complexity of the system leaves many families lost before they even begin. Campbell, a Harvard University economist and coauthor of a book examining the country’s broken personal finance structure, pointed to a system built to confuse and punish those who lack time, training, or access.

“Creditors are just breathing down their necks,” Carol Fox told Bloomberg News, while noting that rising borrowing costs, shrinking consumer spending, and trade battles under the current administration have left owners desperate. Fox serves as a court-appointed Subchapter V trustee in Southern Florida and has watched the crisis unfold case by case.

During a cabinet meeting on Tuesday, Trump told those present that affordability “doesn’t mean anything to anybody.” He added that Democrats created a “con job” to mislead the public.

However, more than $30 million in taxpayer funds reportedly have supported his golf travel. Reports show Kristi Noem and FBI Director Kash Patel have also made extensive use of private jets through government and political networks. The administration approved a $40 billion bailout of Argentina. The president’s wealthy donors recently gathered for a dinner celebrating his planned $300 million White House ballroom.

During an appearance on CNBC, Mark Zandi, an economist, warned that the country could face serious economic threats. “We have learned that people make many mistakes,” Campbell added. “And particularly, sadly, less educated and poorer people tend to make worse mistakes.”

Continue Reading

#NNPA BlackPress

The Numbers Behind the Myth of the Hundred Million Dollar Contract

BLACKPRESSUSA NEWSWIRE — Odell Beckham Jr. did not spark controversy on purpose. He sat on The Pivot Podcast and tried to explain the math behind a deal that looks limitless from the outside but shrinks fast once the system takes its cut.

Published

on

By Stacy M. Brown
Black Press USA Senior National Correspondent

Odell Beckham Jr. did not spark controversy on purpose. He sat on The Pivot Podcast and tried to explain the math behind a deal that looks limitless from the outside but shrinks fast once the system takes its cut. He looked into the camera and tried to offer a truth most fans never hear. “You give somebody a five-year $100 million contract, right? What is it really? It is five years for sixty. You are getting taxed. Do the math. That is twelve million a year that you have to spend, use, save, invest, flaunt,” said Beckham. He added that buying a car, buying his mother a house, and covering the costs of life all chip away at what people assume lasts forever.

The reaction was instant. Many heard entitlement. Many heard a millionaire complaining. What they missed was a glimpse into a professional world built on big numbers up front and a quiet erasing of those numbers behind the scenes.

The tax data in Beckham’s world is not speculation. SmartAsset’s research shows that top NFL players often lose close to half their income to federal taxes, state taxes, and local taxes. The analysis explains that athletes in California face a state rate of 13.3 percent and that players are also taxed in every state where they play road games, a structure widely known as the jock tax. For many players, that means filing up to ten separate returns and facing a combined tax burden that reaches or exceeds 50 percent.

A look across the league paints the same picture. The research lists star players in New York, Philadelphia, Chicago, Detroit, and Cleveland, all giving up between 43 and 47 percent of their football income before they ever touch a dollar. Star quarterback Phillip Rivers, at one point, was projected to lose half of his playing income to taxes alone.

A second financial breakdown from MGO CPA shows that the problem does not only affect the highest earners. A $1 million salary falls to about $529,000 after federal taxes, state and city taxes, an agent fee, and a contract deduction. According to that analysis, professional athletes typically take home around half of their contract value, and that is before rent, meals, training, travel, and support obligations are counted.

The structure of professional sports contracts adds another layer. A study of major deals across MLB, the NBA, and the NFL notes that long-term agreements lose value over time because the dollar today has more power than the dollar paid in the future. Even the largest deals shrink once adjusted for time. The study explains that contract size alone does not guarantee financial success and that structure and timing play a crucial role in a player’s long-term outcomes.

Beckham has also faced headlines claiming he is “on the brink of bankruptcy despite earning over one hundred million” in his career. Those reports repeated his statement that “after taxes, it is only sixty million” and captured the disbelief from fans who could not understand how money at that level could ever tighten.

Other reactions lacked nuance. One article wrote that no one could relate to any struggle on eight million dollars a year. Another described his approach as “the definition of a new-money move” and argued that it signaled poor financial choices and inflated spending.

But the underlying truth reaches far beyond Beckham. Professional athletes enter sudden wealth without preparation. They carry the weight of family support. They navigate teams, agents, advisors, and expectations from every direction. Their earning window is brief. Their career can end in a moment. Their income is fragmented, taxed, and carved up before the public ever sees the real number.

The math is unflinching. Twenty million dollars becomes something closer to $8 million after federal taxes, state taxes, jock taxes, agent fees, training costs, and family responsibilities. Over five years, that is about $40 million of real, spendable income. It is transformative money, but not infinite. Not guaranteed. Not protected.

Beckham offered a question at the heart of this entire debate. “Can you make that last forever?”

Continue Reading

#NNPA BlackPress

FBI Report Warns of Fear, Paralysis, And Political Turmoil Under Director Kash Patel

BLACKPRESSUSA NEWSWIRE — Six months into Kash Patel’s tenure as Director of the Federal Bureau of Investigation, a newly compiled internal report from a national alliance of retired and active-duty FBI agents and analysts delivers a stark warning about what the Bureau has become under his leadership.

Published

on

By Stacy M. Brown
Black Press USA Senior National Correspondent

Six months into Kash Patel’s tenure as Director of the Federal Bureau of Investigation, a newly compiled internal report from a national alliance of retired and active-duty FBI agents and analysts delivers a stark warning about what the Bureau has become under his leadership. The 115-page document, submitted to Congress this month, is built entirely on verified reporting from inside field offices across the country and paints a picture of an agency gripped by fear, divided by ideology, and drifting without direction.

The report’s authors write that they launched their inquiry after receiving troubling accounts from inside the Bureau only four months into Patel’s tenure. They describe their goal as a pulse check on whether the ninth FBI director was reforming the Bureau or destabilizing it. Their conclusion: the preliminary findings were discouraging.

Reports Describe Widespread Internal Distrust and Open Hostility Toward President Trump

Sources across the country told investigators that a large number of FBI employees openly express hostility toward President Donald Trump. One source reported seeing an “increasing number of FBI Special Agents who dislike the President,” adding that these employees were exhibiting what they called “TDS” and had lost “their ability to think critically about an issue and distinguish fact from fiction.” Another source described employees making off-color comments about the administration during office conversations.

The sentiment reportedly extends beyond domestic lines. Law enforcement and intelligence partners in allied countries have privately expressed fear that the Trump administration could damage long-term international cooperation according to a sub-source who reported those concerns directly to investigators.

Pardon Backlash and Fear of Retaliation

The President’s January 20 pardons of individuals convicted for their roles in the January 6 attack ignited what the report calls demoralization inside the Bureau. One FBI employee said they were “demoralized” that individuals “rightfully convicted” were pardoned and feared that some of those individuals or their supporters might target them or their family for carrying out their duties. Another source described widespread anger that lists of personnel who worked on January 6 investigations had been provided to the Justice Department for review, noting that agents “were just following orders” and now worry those lists could leak publicly.  

Morale In Decline

Morale among FBI employees appears to be sinking fast. There were a few scattered positive notes, but the weight of the reporting describes morale as low, bad, or terrible. Agents with more than a decade of service told investigators they feel marginalized or ignored. Some are counting the days until they can retire. One even uses a countdown app on their phone.  

Culture Of Fear

Layered over that unhappiness is something far more corrosive. A culture of fear. Sources say Patel, though personable, created mistrust from the start because of harsh remarks he made about the FBI before taking office. Agents took those comments personally. They now work in an atmosphere where employees keep their heads down and speak carefully. Managers wait for directions because they are afraid a wrong move could cost them their jobs. One source said agents dread coming to work because nobody knows who will be reassigned or fired next.

Leadership Concerns

The report also paints a picture of leaders unprepared for the jobs they hold. Multiple sources said Patel is in over his head and lacks the breadth of experience required to understand the Bureau’s complex programs. Some said Deputy Director Dan Bongino should never have been appointed because the role requires deep institutional knowledge of FBI operations. A sub-source recounted Bongino telling employees during a field office visit that “the truth is for chumps.” Employees who heard it were stunned and offended.

Social Media and Communication Breakdowns

Communication inside the Bureau has become another source of frustration. Sources said Patel and Bongino spend too much time posting on social media and not enough time communicating with employees in clear and official ways. Several told investigators they learn more about FBI operations from tweets than from internal channels.

ICE Assignments Raise Alarm

Nothing has sparked more frustration inside the FBI than the orders requiring agents to assist Immigration and Customs Enforcement. The reporting shows widespread resentment and fear over these assignments. Agents say they have little training in immigration law and were ordered into operations without proper planning. Some said they were put in tactically unsafe positions. They also warned that being pulled away from counterterrorism and counterintelligence investigations threatens national security. One sub-source asked, “If we’re not working CT and CI, then who is?”  

DEI Program Removal

Even the future of diversity programs became a point of division. Some agents praised Patel’s removal of DEI initiatives. Others said the old system left them afraid to speak honestly because they worried about being labeled racist. The reporting shows a deep and unresolved conflict over whether DEI strengthened the organization or weakened it.

Notable Incidents

The document also details several incidents that have become part of FBI lore. Patel ordered all employees to remove pronouns and personal messages from their email signatures yet used the number nine in his own. Agents laughed at what they saw as hypocrisy. In another episode, FBI employees who discussed Patel’s request for an FBI-issued firearm were ordered to take polygraph examinations, which one respected source described as punitive. And in Utah, Patel refused to exit a plane without a medium-sized FBI raid jacket. A team scrambled to find one and finally secured a female agent’s jacket. Patel still refused to step out until patches were added. SWAT members removed patches from their own uniforms to satisfy the demand.

A Bureau at a Crossroad

The Alliance warns that the Bureau stands at a difficult crossroads. They write that the FBI faces some of the most daunting challenges in its history. But even in despair, a few voices say something different. One veteran source said “It is early, but most can see the mission is now the priority. Case work and threats are the focus again. Reform is headed in the right direction.”  

Continue Reading

Subscribe to receive news and updates from the Oakland Post

* indicates required

CHECK OUT THE LATEST ISSUE OF THE OAKLAND POST

ADVERTISEMENT

WORK FROM HOME

Home-based business with potential monthly income of $10K+ per month. A proven training system and website provided to maximize business effectiveness. Perfect job to earn side and primary income. Contact Lynne for more details: Lynne4npusa@gmail.com 800-334-0540

Facebook

Costco. Courtesy image.
Bay Area1 month ago

Post Salon to Discuss Proposal to Bring Costco to Oakland Community meeting to be held at City Hall, Thursday, Dec. 18

Saying “Oakland is on the move,” Mayor Barbara Lee announces results of Measure U bond sale, Dec. 9, at Oakland City Hall with city councilmembers and city staff among those present. Photo courtesy of the City of Oakland.
Activism1 month ago

Mayor Lee, City Leaders Announce $334 Million Bond Sale for Affordable Housing, Roads, Park Renovations, Libraries and Senior Centers

Activism1 month ago

Oakland Post: Week of December 10 – 16, 2025

OUSD Supt. Denise Saddler. File photo.
Activism1 month ago

Oakland School Board Grapples with Potential $100 Million Shortfall Next Year

The Pride and Joy Band performed at the first annual Kwanzaa celebration sponsored by Fayeth Gardens. Courtesy photo.
Arts and Culture1 month ago

Fayeth Gardens Holds 3rd Annual Kwanzaa Celebration at Hayward City Hall on Dec. 28

Kellie Todd Griffin. CBM file photo.
Activism1 month ago

2025 in Review: Seven Questions for Black Women’s Think Tank Founder Kellie Todd Griffin

Photos courtesy of National Archives.
Activism1 month ago

Ann Lowe: The Quiet Genius of American Couture

The ‘aunties’ playing cards. iStock photo by Andreswd.
Advice1 month ago

COMMENTARY: If You Don’t Want Your ‘Black Card’ Revoked, Watch What You Bring to Holiday Dinners

NCAA football history was made this year when Head Coach from Mississippi Valley State, Terrell Buckley and Head Coach Desmond Gumbs both had starting kickers that were Women. This picture was taken after the game.
Activism4 weeks ago

Desmond Gumbs — Visionary Founder, Mentor, and Builder of Opportunity

Shutterstock
Advice1 month ago

Support Your Child’s Mental Health: Medi-Cal Covers Therapy, Medication, and More

BRIDGE Housing President and CEO Ken Lombard. Courtesy of BRIDGE Housing.
Activism1 month ago

BRIDGE Housing President and CEO Ken Lombard Scores Top Honors for Affordable Housing Leadership

Affordable housing is the greatest concern for consumers, it’s followed by the cost of groceries. Courtesy photo.
Activism4 weeks ago

Families Across the U.S. Are Facing an ‘Affordability Crisis,’ Says United Way Bay Area

At the International Association of Chiefs of Police Conference, Flock Safety introduces new public safety technology – Amplified Intelligence, a suite of AI-powered tools designed to improve law enforcement investigations. Courtesy photo.
Alameda County4 weeks ago

Oakland Council Expands Citywide Security Cameras Despite Major Opposition

Councilmember Carroll Fife celebrates major milestone for Black arts, culture, and economic power in Oakland. Courtesy photo.
Activism4 weeks ago

Black Arts Movement Business District Named New Cultural District in California

Christmas lights on a house near the writer’s residence in Oakland. Photo by Joseph Shangosola.
Alameda County4 weeks ago

Bling It On: Holiday Lights Brighten Dark Nights All Around the Bay

Trending

Copyright ©2021 Post News Group, Inc. All Rights Reserved.