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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.

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#NNPA BlackPress

COMMENTARY: The National Protest Must Be Accompanied with Our Votes

Just as Trump is gathering election data like having the FBI take all the election data in Georgia from the 2020 election, so must we organize in preparation for the coming primary season to have the right people on ballots in each Republican district, so that we can regain control of the House of Representatives and by doing so, restore the separation of powers and balance that our democracy is being deprived of.

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Dr. John E. Warren Publisher, San Diego Voice & Viewpoint
Dr. John E. Warren, Publisher San Diego Voice & Viewpoint Newspaper. File photo..

By  Dr. John E. Warren, Publisher San Diego Voice & Viewpoint Newspaper

As thousands of Americans march every week in cities across this great nation, it must be remembered that the protest without the vote is of no concern to Donald Trump and his administration.

In every city, there is a personal connection to the U.S. Congress. In too many cases, the member of Congress representing the people of that city and the congressional district in which it sits, is a Republican. It is the Republicans who are giving silent support to the destructive actions of those persons like the U.S. Attorney General, the Director of Homeland Security, and the National Intelligence Director, who are carrying out the revenge campaign of the President rather than upholding the oath of office each of them took “to Defend The Constitution of the United States.”

Just as Trump is gathering election data like having the FBI take all the election data in Georgia from the 2020 election, so must we organize in preparation for the coming primary season to have the right people on ballots in each Republican district, so that we can regain control of the House of Representatives and by doing so, restore the separation of powers and balance that our democracy is being deprived of.

In California, the primary comes in June 2026. The congressional races must be a priority just as much as the local election of people has been so important in keeping ICE from acquiring facilities to build more prisons around the country.

“We the People” are winning this battle, even though it might not look like it. Each of us must get involved now, right where we are.

In this Black History month, it is important to remember that all we have accomplished in this nation has been “in spite of” and not “because of.” Frederick Douglas said, “Power concedes nothing without a struggle.”

Today, the struggle is to maintain our very institutions and history. Our strength in this struggle rests in our “collectiveness.” Our newspapers and journalists are at the greatest risk. We must not personally add to the attack by ignoring those who have been our very foundation, our Black press.

Are you spending your dollars this Black History Month with those who salute and honor contributions by supporting those who tell our stories? Remember that silence is the same as consent and support for the opposition. Where do you stand and where will your dollars go?

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Why Black Parents Should Consider Montessori

BLACKPRESSUSA NEWSWIRE — I have found that there are some educational approaches that consistently provide a safer, more enriching, and more affirmative environment for Black children. The Montessori method, developed by Italian physician Maria Montessori and introduced to the U.S. in the early 20th century, is one such approach.

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By Laura Turner-Essel, PhD

As a mother of four children, I’ve done A LOT of school shopping. I don’t mean the autumn ritual of purchasing school supplies. I mean shopping for schools – pouring over promotional materials, combing through websites, asking friends and community members for referrals to their favorite schools, attending open houses and orientations, comparing curriculums and educational philosophies, meeting teachers and principals, and students who all claim that their school is the best.

But keep in mind – I’m not just a mom of four children. I’m a mom of four Black children, and I’m also a psychologist who is very interested in protecting my little ones from the traumatic experience that school can too often become.

For Black children in the United States, school can sometimes feel more like a prison than an educational institution. Research shows that Black students experience school as more hostile and demoralizing than other students do, that they are disciplined more frequently and more harshly for typical childhood offenses (such as running in the halls or chewing gum in class), that they are often labeled as deviant or viewed as deficient more quickly than other children, that teachers have lower academic expectations of Black students (which, in turn, lowers those students’ expectations of themselves), and that Black parents feel less respected and less engaged by their children’s teachers and school administrators. Perhaps these are some of the underlying reasons that Black students tend to underperform in most schools across the country.

The truth is that schools are more than academic institutions. They are places where children go to gain a sense of who they are, how they relate to others, and where they fit into the world. The best schools are places that answer these questions positively – ‘you are a valuable human being, you are a person who will grow up to contribute great things to your community, and you belong here, with us, exploring the world and learning how to use your gifts.’ Unfortunately, Black children looking for answers to these universal questions of childhood will often hit a brick wall once they walk into the classroom. If the curriculum does not reflect their cultural experiences, the teachers don’t appear to value them, and they spend most of their time being shamed into compliance rather than guided towards their highest potential, well…what can we really expect? How are they supposed to master basic academic skills if their spirits have been crushed?

Here’s the good news. In my years of school shopping, and in the research of Black education specialists such as Jawanza Kunjufu and Amos Wilson, I have found that there are some educational approaches that consistently provide a safer, more enriching, and more affirmative environment for Black children. The Montessori method, developed by Italian physician Maria Montessori and introduced to the U.S. in the early 20th century, is one such approach.

The key feature of Montessori schooling is that children decide (for the most part) what they want to do each day. Led by their own interests and skill levels, children in a Montessori classroom move around freely and work independently or with others on tasks of their own

choosing. The classroom is intentionally stocked with materials tailored to the developmental needs of children, including the need to learn through different senses (sight, touch/texture, movement, etc.). The teacher in a Montessori classroom is less like a boss and more like a caring guide who works with each child individually, demonstrating various activities and then giving them space to try it on their own. The idea is that over time, students learn to master even the toughest tasks and concepts, and they feel an intense sense of pride and accomplishment because they did it by themselves, without pressure or pushing.

I think that this aspect of the Montessori method is good for all kids. Do you remember the feeling of having your creativity or motivation crushed by being told exactly what to do, when to do it, how to do it, and why? The truth is that when presented with a new challenge and then given space, children actually accomplish a lot! They are born with a natural desire to learn. It is that spirit of curiosity, sense of wonder, and excitement to explore that Montessori helps to keep alive in a child. But that’s not the only reason that I think Black parents need to consider Montessori.

Fostering a love of learning is great. But more importantly, I think that Montessori students excel at learning to love. It begins with Montessori’s acknowledgement that all children are precious because childhood is a precious time. In many school systems, Black children are treated like miniature adults (at best) or miniature criminals (at worst), and are subjected to stressful situations that no kids are equipped to handle – expectations to be still and silent for long periods, competitive and high-stakes testing, and punitive classroom discipline. It’s easy to get the sense that rather than being prepared for college or careers, our children are being prepared to fail. Couple this with the aforementioned bias against Black children that seems to run rampant within the U.S. school system, and you end up with children who feel burned out and bitter about school by the time they hit 3rd grade.

In my experience, Montessori does a better job of protecting the space that is childhood – and all the joy of discovery and learning that should come along with that. Without the requirement that students “sit down and shut up,” behavioral issues in Montessori classrooms tend to be non-existent (or at least, the Montessori method doesn’t harp on them; children are gently redirected rather than shamed in front of the class). Montessori students don’t learn for the sake of tests; they demonstrate what they’ve learned by sharing with their teacher or classmates how they solve real-world problems using the skills they’ve gained through reading, math, or science activities. And by allowing children a choice of what to focus on throughout the day, Montessori teachers demonstrate that they honor and trust children’s natural intelligence. The individualized, careful attention they provide indicates to children that they are each seen, heard, and valued for who they are, and who they might become. Now that’s love (and good education).

As a parent, I’ve come to realize that many schools offer high-quality academics. Montessori is no different. Students in Montessori schools gain exposure to advanced concepts and the materials to work with these concepts hands-on. Across the nation, Montessori schools emphasize early literacy development, an especially important indicator of life success for young Black boys and men. Montessori students are provided with the opportunity to be

successful every day, and the chance to develop a sense of competence and self-worth based on completing tasks at their own pace.

But I have also learned that the important questions to ask when school shopping are often not about academics at all. I now ask, ‘Will my children be treated kindly? Will they be listened to? Protected from bias and bullying? Will they feel safe? Will this precious time in their lives be honored as a space for growth, development, awe, and excitement? Will they get to see people like them included in the curriculum? Will they be seen as valuable even if they don’t always ‘measure up’ to other kids on a task? Will they get extra support if they need it? Will the school include me in major decisions? Will the school leaders help to make sure that my children reach their fullest potential? Will the teacher care about my children almost as much as I do?’

Consistently, it’s been the Montessori schools that have answered with a loud, resounding ‘Yes!’ That is why my children ended up in Montessori schools, and I couldn’t be happier with that decision. If you’re a parent like me, shopping for schools with the same questions in mind, I’d urge you to consider Montessori education as a viable option for your precious little ones. Today more than ever, getting it right for our children is priceless.

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LIVE from the NMA Convention Raheem DeVaughn Says The Time Is Now: Let’s End HIV in Our Communities #2

Set against the backdrop of the NMA conference, Executive Officers from the National Medical Association, Grammy Award Winning Artist and Advocate Raheem DeVaughn, and Gilead Sciences experts, are holding today an important conversation on HIV prevention and health equity. Black women continue to be disproportionately impacted by HIV despite advances in prevention options. Today’s event […]

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Set against the backdrop of the NMA conference, Executive Officers from the National Medical Association, Grammy Award Winning Artist and Advocate Raheem DeVaughn, and Gilead Sciences experts, are holding today an important conversation on HIV prevention and health equity.

Black women continue to be disproportionately impacted by HIV despite advances in prevention options. Today’s event is designed to uplift voices, explore barriers to access, and increase awareness and key updates about PrEP, a proven prevention method that remains underutilized among Black women. This timely gathering will feature voices from across health, media, and advocacy as we break stigma and center equity in HIV prevention.

Additional stats and information to know:

Black women continue to be disproportionately affected by HIV, with Black women representing more than 50% of new HIV diagnoses among women in the U.S. in 2022, despite comprising just 13% of women in the U.S.

Women made up only 8% of PrEP users despite representing 19% of all new HIV diagnoses in 2022.

● Gilead Sciences is increasing awareness and addressing stigma by encouraging regular HIV testing and having judgment-free conversations with your healthcare provider about prevention options, including oral PrEP and long-acting injectable PrEP options.

● PrEP is an HIV prevention medication that has been available since 2012.

● Only 1 in 3 people in the U.S. who could benefit from PrEP were prescribed a form of PrEP in 2022.

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