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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.

Published

5 years ago

August 4, 2019

Oakland Post

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.

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PRESS ROOM: Clyburn, Pressley, Scanlon, Colleagues Urge Biden to Use Clemency Power to Address Mass Incarceration Before Leaving Office

NNPA NEWSWIRE — Mass incarceration remains a persistent, systemic injustice that erodes the soul of America. Our nation has the highest incarceration rate in the world, with nearly two million people locked in jails and prisons throughout the country.

Published

2 days ago

November 21, 2024

Oakland Post

Read the letter here.

Watch the press conference here.

WASHINGTON, DC – Today, Congressman James E. Clyburn (SC-06), Congresswoman Ayanna Pressley (MA-07), and Congresswoman Mary Gay Scanlon (PA-05) led 60 of their colleagues in sending a letter to President Biden urging him to use his executive clemency power in the final months of his presidency to reunite families, address longstanding injustices in our legal system, and set our nation on the path toward ending mass incarceration.

The lawmakers hosted a press conference earlier today to discuss the letter. A full video of their press conference is available here and photos are available here.

“Now is the time to use your clemency authority to rectify unjust and unnecessary criminal laws passed by Congress and draconian sentences given by judges,” the lawmakers wrote in their letter. “The grant of pardons and commutations and the restoration of rights will undoubtedly send a powerful message across the country in support of fundamental fairness and furthering meaningful criminal justice reform.”

Mass incarceration remains a persistent, systemic injustice that erodes the soul of America. Our nation has the highest incarceration rate in the world, with nearly two million people locked in jails and prisons throughout the country. The extreme use of incarceration has resulted in one in two adults having had an incarcerated family member. People of color are disproportionately put behind bars, along with individuals from low-income communities, LGBTQIA+ folks, and those with disabilities. The bloated prison system reflects and emboldens biases that undermine the ideals of our nation and diminish trust in the rule of law. Mass incarceration attacks the most vulnerable Americans, thereby destabilizing families and inflicting intergenerational trauma.

In their letter to President Biden, the lawmakers praised the President’s efforts to create a fair and just criminal legal system by pardoning people convicted of simple marijuana possession and LGBTQ+ former servicemembers and urged the President to use his clemency powers to help broad classes of people and cases, including the elderly and chronically ill, those on death row, people with unjustified sentencing disparities, and women who were punished for defending themselves against their abusers. The lawmakers also outlined the fiscal toll of the growing mass incarceration crisis.

“You have the support of millions of people across the country who have felt the harms of mass incarceration: young children longing to hug their grandparents, people who have taken responsibility for their mistakes, and those who simply were never given a fair chance,” the lawmakers wrote. “These are the people seeking help that only you can provide through the use of your presidential clemency power.”

Joining Representatives Clyburn, Pressley, and Scanlon in sending the letter are Representatives Joyce Beatty, Sanford Bishop, Shontel Brown, Cori Bush, André Carson, Troy Carter, Yvette Clarke, Jasmine Crockett, Valerie Foushee, Al Green, Jahana Hayes, Steven Horsford, Jonathan Jackson, Pramila Jayapal, Henry Johnson, Sydney Kamlager-Dove, Robin Kelly, Summer Lee, Jennifer McClellan, Gregory Meeks, Delia Ramirez, Jan Schakowsky, Robert Scott, Terri Sewell, Marilyn Strickland, Bennie Thompson, Rashida Tlaib, and Bonnie Watson Coleman.

The lawmakers’ letter is supported by the American Civil Liberties Union; Center for Popular Democracy; Last Prisoner Project; Lawyers’ Committee for Civil Rights Under Law; Death Penalty Action; The National Council for Incarcerated and Formerly Incarcerated Women and Girls; The Faith Leaders of Color Coalition; Second Chance Justice of MCAN; JustLeadershipUSA; FAMM; The Episcopal Church; The Bambi Fund; Free Billie Allen Campaign; People’s Coalition for Safety and Freedom; Prophetic Resistance Boston; and Families Against Mandatory Minimums.

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Tennessee State University Set to Debut the First Division I Hockey Team at An HBCU

THE AFRO — “I am incredibly excited to embark on building this program, supported by God, my family, TSU students, alumni, and all those eagerly awaiting this moment,” said Duanté Abercrombie, the head coach of the Tennessee State Tigers ice hockey team, in a press release courtesy of TSU Athletics. “I firmly believe that one day, TSU will be recognized not only as a powerhouse on the ice but also as a program whose student-athletes leave a profound legacy on the world, enriched by the lessons learned at TSU.”

Published

3 days ago

November 21, 2024

admin

By Mekhi Abbott
Special to the AFRO
mabbott@afro.com

Tennessee State University (TSU) continues to break ground on a historic journey to become the first historically Black college or university (HBCU) to field a National Collegiate Athletic Association Division I ice hockey team. Alongside some assistance from the National Hockey League (NHL), the NHL Players’ Association and the Nashville Predators, the TSU Tigers have already named their official head coach, unveiled their jersey and received their first official commitment from a student-athlete.

TSU held an official press conference to announce the plan in June 2023. Their first official season as a sanctioned Division I program is planned to commence in 2025-26. On April 18, TSU named Duanté Abercrombie as the head coach of the Tennessee State Tigers ice hockey team.

“I am incredibly excited to embark on building this program, supported by God, my family, TSU students, alumni, and all those eagerly awaiting this moment,” said Abercrombie in a press release courtesy of TSU Athletics. “I firmly believe that one day, TSU will be recognized not only as a powerhouse on the ice but also as a program whose student-athletes leave a profound legacy on the world, enriched by the lessons learned at TSU.”

Abercrombie was raised in Washington, D.C., and was mentored by hockey legend Neal Henderson, the first Black man to be inducted into the United States Hockey Hall of Fame. Abercrombie attended Gonzaga College High School and graduated from Hampton University, where he was a track and field athlete prior to retiring due to an injury. After college, Abercrombie briefly played professional hockey in both the New Zealand Ice Hockey League as well as the Federal Hockey League.

After his career as a professional hockey player, Abercrombie moved onto coaching, including stints with his alma mater Gonzaga and Georgetown Preparatory School. In 2022-23, Abercrombie was a member of the coaching staff for NHL’s Toronto Maple Leafs organization.

“We are no longer doing club play in 2024-25. We are going right into D1 play for 2025-26,” Nick Guerriero told the AFRO. Guerriero is the assistant athletic director of communications and creative content at Tennessee State.

On Jan. 19, TSU got their first official commitment from an ice hockey recruit, Xavier Abel. Abel played at Drury University and scored 12 goals in 34 games, including three game-winning goals. Abel was recruited by Guerriero.

In July, the Tigers got their second commitment from forward Trey Fechko. In October, Trey’s brother Marcus Fechko also committed to Tennessee State. Since, the Tigers have also signed forward Greye Rampton, goaltender Johnny Hicks, Grady Hoffman and four-star forward Bowden Singleton. Singleton flipped his commitment from North Dakota to Tennessee State. Guerriero said that TSU has a “few” other recruits that they are waiting to announce during their November signing period.

“I think it’s important to invest in these unorthodox sports for Black athletes because it allows Black children to have more opportunities to play sports in general,” said Zion Williams, a 2024 Gettysburg College graduate and former collegiate athlete. “The more opportunities that children have, the better. They won’t feel like they are boxed into one thing or sport.”

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HBCU Champions Advance to Postseason Play

WASHINGTON INFORMER — From HBCU football teams, to the University of the District of Columbia’s soccer program, and Howard University’s volleyball players, athletes are still working to capture titles and garner bragging rights in their various conferences.

Published

3 days ago

November 21, 2024

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By Ed Hill | The Washington Informer

As the semester quickly winds down, several teams at historically Black colleges and universities (HBCUs) are hoping to find success in the postseason.

From HBCU football teams, to the University of the District of Columbia’s soccer program, and Howard University’s volleyball players, athletes are still working to capture titles and garner bragging rights in their various conferences.

South Carolina State proved all the prognosticators wrong by winning the Mid-Eastern Athletic Conference (MEAC) regular season title after being picked to finish fourth in the preseason poll.

As a result of their success, defeating the Morgan State Bears 54-7 on Nov. 16, the South Carolina Bulldogs now qualify for the Cricket Celebration Bowl on Dec. 14 in Atlanta, kicking off at noon and streaming on ABC.

However, another game between Jackson State and Southern University must happen a week before the big matchup in Atlanta, before the Bulldogs (8-2, 4-0 MEAC) know who they’ll be going against.

The Bulldogs, who have one game remaining on the schedule against Delaware State on Saturday, Nov. 23, will square off against the winner of the Southwestern Athletic Conference (SWAC) title game between Jackson State and Southern University on Dec. 7.

The Southern Jaguars (7-4, 6-1 SWAC) won the West Division, while the Jackson State Tigers (9-2, 7-0 SWAC) captured the East Division and the two will now meet up on Jackson, Mississippi at Mississippi Veterans Memorial Stadium, kicking off at 1 p.m. and streaming on ESPN2.

In the Central Intercollegiate Athletic Association (CIAA) championship game, it was Virginia Union University that defeated rival Virginia State 21-17 for the title in Salem, Virginia, on Nov. 16.

Virginia Union University celebrates after defeating Virginia State University, and winning the regular season CIAA title in Salem, Virginia, on Nov. 16. (Courtesy photo)

It was the Virginia Union University Panthers’ second straight CIAA title, avenging a 35-28 loss to the Virginia State University Trojans on Nov. 9. The Panthers (8-3 overall, 6-1 in the CIAA) got an effort of 178 yards rushing on 32 carries and a touchdown from Jodo Byers.

Virginia Union will open the playoffs with a road game at Wingate in Wingate, North Carolina on Nov. 23, with kickoff at 1 p.m.

In the Southern Intercollegiate Athletic Association (SIAC) championship, it was Miles College (9-2) overwhelming Clark Atlanta (7-3), 53-25 in the title game. The Miles College Golden Bears piled up over 430 yards of total offense, giving them a NCAA Division 2 bid as they host Carson-Newman on Nov. 23 at 11 a.m.

Miles boasts one of the top defenses in the country in Division 2, having forced 33 turnovers.

University of the District of Columbia Soccer Team Defeats Molloy

In men’s soccer, the University of the District of Columbia defeated Molloy University in the East Coast Conference (ECC) championships final on Nov. 17.

The University of the District of Columbia men’s soccer team celebrates after winning the East Coast Conference championship game on Nov. 17 (Courtesy photo)

Mustafa Tahir scored the game-winning goal in the 100th minute. It was Tahir’s third game winner of the season.

The Firebirds (8-7-4, 3-4-1 in the ECC) earned an automatic bid to the NCAA Division 2 tournament against the No. 7 seed Post University. on Friday, Nov. 22. UDC enters the game on a four-game win streak.

Howard University Volleyball Dominating in the MEAC

Howard University is one of the hottest women’s college volleyball teams.

Howard University’s volleyball team has been on fire at 21-5 overall and undefeated in the Mid-Eastern Athletic Conference. (Courtesy photo)

The Bison (21-5 overall, 14-0 MEAC) went undefeated in league play and are on a current 15-game game win streak headed into Friday’s tournament in Dover, Delaware.

The final is scheduled for Sunday at 8:30 pm on ESPNU.

Howard is the top seed, and they will be looking to capture their sixth tournament title and NCAA bid in the past nine years.

The Bison boast one of the top players in the country in junior outside hitter Rya McKinnon, who is headed for an unprecedented third straight Player of the Year honor.