June 19th is World Sickle Cell Day

By Alana Mauger

Red Cross graphic – World Sickle Cell Day

Monday, June 19th is an important day for celebration and awareness. It marks Juneteenth, our newest federal holiday and a day of reflection and pride that commemorates the ending of slavery in the United States.

It’s also World Sickle Day, established by the United Nations in 2008 and commemorated every June 19th to increase awareness about sickle cell disease – the most common genetic disorder in the U.S. An estimated 100,000 people in the U.S. are living with sickle cell disease, most of whom are of African or Latino descent.

Sickle cell disease causes red blood cells to be hard and crescent-shaped – like a sickle – instead of soft and round, making it difficult for blood to flow smoothly and carry oxygen adequately to the rest of the body. Sickle cell warriors can experience complications like severe pain, anemia, infections, stroke and organ damage.

Blood transfusions help relieve sickle cell disease symptoms by increasing the number of healthy red blood cells in the body, helping to deliver oxygen throughout the body and unblocking blood vessels. But ensuring hospitals have an adequate supply of the major blood types – O, A, B and AB – is only part of the equation.

There are more than 600 known antigens – substances on red blood cells that help determine your blood type – some of which are unique to specific racial and ethnic groups.  Individuals who require regular blood transfusions, like those with sickle cell disease, need blood that is matched more closely to reduce possible complications. Therefore, a sickle warrior is more likely to find a compatible blood match from a donor of the same race or similar ethnic group.

Over the next few months, the Red Cross Southeastern Pennsylvania and New Jersey regions will be holding several Community of Giving blood drives specifically to help people living with sickle cell disease. The drives are in memory of E. Steven Collins, a legendary Philadelphia radio icon and beloved community leader, who died of a heart attack in 2013.

E. Steven worked as a professional broadcaster for decades with a long tenure at Radio One. He also had numerous areas of civic outreach, including advocating for people with sickle cell disease. He helped bring attention to the cause by supporting community initiatives that increased education and funding.

More than a decade after his death, the Community of Giving blood drives to help those living with sickle cell disease will continue E. Steven’s long legacy of making a difference. The drives will take place from June 12th through September 28th at locations in Southeastern Pennsylvania and New Jersey.

To schedule an appointment to donate blood, visit RedCrossBlood.org.

2024 E. Steven Collins Community of Giving Blood Drives: 

Enon Tabernacle Baptist Church
June 29, 9 a.m.-2 p.m.
2800-2900 Cheltenham Ave., Philadelphia

Second Baptist Church of Mount Holly
June 29, 2-7 p.m.
306 Washington St., Mount Holly, N.J.

Epiphany Fellowship Church
July 6, 9 a.m.-2 p.m.
1632 W. Diamond St., Philadelphia

Christian Stronghold Baptist Church
Aug. 8, 8 a.m.-2 p.m.
4701 Lancaster Ave., Philadelphia

Assemblywoman Verlina Reynolds-Jackson
Sept. 6, noon-5 p.m.
431 Pennington Ave., Trenton, N.J.

Office of City Commissioner Omar Sabir
Sept. 24, 10 a.m.-3 p.m.
1400 JFK Blvd., Philadelphia

Lincoln University
Sept. 27, 1-6 p.m.
1570 Baltimore Pike, Lincoln University

Bethlehem Baptist Church
Sept. 28, 9 a.m.-2 p.m.
712 Penllyn Pike, Spring House

A mother speaks out on her son’s sickle cell diagnosis to help others

By Jenny Farley

Tiara Thomas with her son Ethyn, who was diagnosed with sickle cell disease soon after his birth. Submitted photo.

In the days after Tiara Thomas gave birth to her son Ethyn, she learned devastating news.

“The realization of having to be scared all the time, be on edge all the time, knowing that my child will never have a normal life,” she said.

The routine heel stick performed on newborns at the hospital revealed Ethyn had the most common genetic blood disorder in the United States — sickle cell disease. It affects 1 out of every 365 Black or African American births.

“He can never do some of the things that a normal child does. It was just very upsetting.”

In people who have sickle cell disease, red blood cells are hard and shaped like a crescent, instead of being soft and round. The blood cells can’t adequately carry oxygen throughout the body, which can lead to extreme pain, organ damage, anemia and sometimes even strokes. Many patients will need several blood transfusions throughout their life.

“The Red Cross has meant everything because, if my son has to get a transfusion, and even if it’s not my son, there are so many other people in the world that need these transfusions.”

Ethyn is a toddler now and like all toddlers, Tiara said sometimes he can be a “handful,” but most of the time he is “laid back or playful.”

He loves music and starts dancing when he hears it. He also loves books he can touch and feel.

At times it’s hard to know if he is in pain. Whenever he gets a fever, Tiara has to rush him to the emergency room to make sure he’s not having a complication that could threaten his life. Sometimes he has to be admitted.

When she thinks about the biggest challenge moms of kids who have sickle cell disease face, Tiara said unfortunately there are too many to choose from.

“One of the biggest, for sure, would be the fear of not knowing when my son could possibly take his last breath due to this disease.”

She’s speaking out about her son’s diagnosis to help other people who suffer from sickle cell disease and to get the word out about what everyone can do to help – most importantly donate blood. “Please donate, please.”

Tiara works as a community health worker at Crescent Foundation, an organization that helped her when her son was first diagnosed. “They have been a blessing to me and my son. I love working there.”

Crescent Foundation helps people learn about sickle cell disease and get the resources they need to thrive.

“They know how passionate I am about this cause and how dedicated I am.”

Discovering your child has a genetic disease can be overwhelming.Tiara said when she found out it hurt “unbearably” and she “cried like a baby for weeks.” A community of supporters, like the American Red Cross and Crescent Foundation, can help.

“You’re not in it alone, you’ll get through it.”

One in 3 African American blood donors are a match for people with sickle cell disease. To help make sure patients get the blood they need, the Red Cross is working with partners in Black communities to increase the number of blood donors who are Black.

Tiara said, “As African Americans, we have been in some trying times. Unfortunately, that’s always been our case. However, these last few years, we’ve seen us come together. And I feel like we should do the same when it comes to this call because this is another form of protecting our community.”

To schedule an appointment to donate blood, visit RedCrossBlood.org, use the Blood Donor App or call 1-800-RED CROSS.

Tahirah Austin-Muhammad shares her sickle cell journey, advocates for healthcare equality

By Alana Mauger

Tahirah Austin-Muhammad. Submitted photo

When Tahirah Austin-Muhammad was born in the late 1980s, testing for sickle cell disease in newborns was not a standard practice at many hospitals. So when her symptoms appeared at age 4 – tiredness, aches and pains, stomach aches – Tahriah’s parents treated it the only way they knew how – Tylenol, homemade rubs and lots of love.

But when she started kindergarten, it became clear that something else was going on.

“I loved to play, but it tired me out quickly. I couldn’t keep up with my peers physically,” she recalled. “Everything came to a head when I passed out at school. I stood up, walked to the door and blacked out.”

Tahirah describes the situation as “being blurry” when she woke up, but she remembers feeling tired and being in so much pain that she couldn’t sit up. Her dad arrived at the school and drove her straight to Children’s Hospital of Philadelphia (CHOP).

She was first diagnosed with leukemia, but then Dr. Kim Smith, a physician who specialized in sickle cell disease, took a second look at her lab work.

“Sickle cell disease is often misdiagnosed. That’s why it’s important to have doctors who look like us,” Tahirah shared.

That was her first sickle cell crisis at age 6, but it would be far from her last. Tahirah spent most of fourth grade hospitalized at CHOP.  Later her spleen, gallbladder and appendix were removed in the first of many major surgeries.

Despite it all, she credits her parents and CHOP family for instilling in her the belief that there’s nothing she couldn’t do.

“I ran track in eighth grade. I just had to take more breaks and hydrate a lot more,” she said.

Pediatric vs adult care

Tahirah earned a bachelor’s degree in Biology from Neumann University and has traveled the world. She has thrived in spite of her condition. But like all people living with sickle cell disease, her transition from pediatric to adult care was wrought with obstacles.

“My first experience in an adult [emergency department], I sat there for over 10 hours. I cried. I called my social worker at CHOP and begged to come back,” she recalled. “She provided me with real-time advocacy – what to say to get the help I needed. It’s so stressful when you’re in a pain crisis.”

In the U.S., sickle cell disease predominately affects people who are Black/African American or Latinx. Tahirah explains that it’s often seen as a childhood disease.

“The goal pediatrics had was for us to survive to adulthood, but the adult side wasn’t ready for us,” she said. “There is racial bias and extreme inequities in health care. I realized there was a need for support for adults with sickle cell once I got into adult care. Too many of us were dying for preventable things.”

Sickle cell advocacy

In 2017, Tahirah co-founded the Philadelphia-based Crescent Foundation, whose mission is to support sickle cell survivors, families and communities with evidence-based research and advocacy. Among its initiatives, the foundation helps sickle cell patients ages 18-24 transition into adult care. It also provides case management to help patients and their families coordinate their medical and social service needs. Importantly, the foundation also educates the next generation of health care professionals about sickle cell disease.

Tahirah admits that as her status, and the status of her fellow Crescent Foundation co-founders, changed in the city of Philadelphia, so did their access to quality health care.

During the COVID-19 pandemic, Tahirah was hospitalized for the first time in 6 years. She describes being put into triage within 5 minutes of arriving in the ER before being admitted for a lung infection. At the same time, in the same hospital where she was receiving compassionate treatment, a young woman was repeatedly calling the Crescent Foundation pleading for help because she had already been in the waiting room for 8 hours.

“I felt helpless; the only difference was they recognized me. My care has changed, and it shouldn’t have,” she said. “Good, compassionate care should be given to everyone at all times.”

The Crescent Foundation held a Red Cross Sickle Cell Awareness Month blood drive in 2021. Pictured (from left): La Valle Warren, Red Cross sickle cell account manager; Tahirah Austin-Muhammad, Crescent Foundation COO and co-founder; Jawanda Hargrove and Shaun Griggs, sickle cell patient advocates; and Ediomi Utuk-Lowery, Crescent Foundation chief marketing and communications officer and co-founder. Photo by Alana Mauger/American Red Cross

Blood donations help

Like many sickle cell survivors, blood transfusions play an important role in Tahirah’s treatment – but it has to be the right match. Repeated blood transfusions over someone’s lifetime can cause a patient to develop a life-threatening immune response against blood from donors that is not closely matched to their own – something Tahirah has experienced more than once.

In Philadelphia, blood from donors who self-identify as Black or African-American is marked with a blue tie tag, designating it as a potential match for a sickle cell patient. Extra tests are performed to ensure recipients receive the right blood.

“I wouldn’t be sitting here today without someone with a good heart,” said Tahirah. “Thank you to whoever is donating blood, but we need so much more.”

 Visit our website to learn more about how blood donations help people living with sickle cell disease and the importance of maintaining a diverse blood supply for patients.

Red Cross welcomes Zeta Phi Beta to Philadelphia for sickle cell education and blood drive

By La Valle Warren, American Red Cross Regional Sickle Cell Account Manager

La Valle Warren (second from right) pictured with Red Cross collections staff at the Zeta Phi Beta Sorority blood drive on July 21, 2022 in Philadelphia. Submitted photo

The American Red Cross Sickle Cell Initiative was pleased to kick off its National Partnership with Zeta Phi Beta Sorority, Inc. in Philadelphia July 18- 24 for their Grand Boule’ 2022, which saw more than 6,000 members show up and show out beautifully in the City of Brotherly Love and Sisterly Affection.

Zeta Phi Beta International President Valerie Hollingsworth-Baker and National Medical Director Dr. Raina Groover collaborated with Red Cross Biomedical Partnership Officer Wendy Tabron and me to welcome the Zeta’s to Philadelphia. The Red Cross hosted a sickle cell disease educational marketing table during the conference over 5 days and held a successful blood drive for its members. Both events took place at the Pennsylvania Convention Center.

With the assistance of  seven-year Red Cross volunteer Eva Oakley from Raleigh N.C., I helped to educate over 8 regions about Sickle Cell Disease. It was exhausting, but I appreciated the great networking and was honored to partake in the Zeta partnership held in our local region.

In Philadelphia and New Jersey, Red Cross blood donations from individuals who self-identify as Black or African American are labeled with a sickle cell blue tag to indicate they may be a match for sickle cell patients. Additional testing is performed these collected donations to match them as closely as possible with sickle cell patients who need a transfusion. When patients face a sickle cell crisis, blood transfusions can save their lives. Testing is also performed for the sickle cell trait on all donations from self-identified African American donors at every blood drive or blood donation center.

The American Red Cross Sickle Cell Initiative is continuing to partner with Black community-based organizations and community groups to help ensure that hospitals have a diverse blood supply. We’re educating and building awareness about the important role that Black blood donors play in helping people with sickle cell disease — the most common genetic blood disease that primarily affects families who are African American or of African descent. When I am out in communities advocating, it feels like a big family reunion, and it’s my duty to educate my community on sickle cell disease.

September is Sickle Cell Awareness Month, and our Sickle Cell Initiative will focus on hosting blood drives with churches and faith-based organization for our “Community of Giving Blood Drive Series” throughout the month.

Visit our website to learn more about sickle cell disease.

Guest column: Give blood to support sickle cell patients this Black History Month

By La Valle Warren, American Red Cross Regional Sickle Cell Account Manager

Black History Month is a time to highlight the significant work and achievements of Black and African Americans to U.S. society. This year, the Red Cross is focusing on the theme of Black health and wellness, especially as it pertains to sickle cell disease.  

The Red Cross Sickle Cell Initiative is making a difference every day in Southeastern Pennsylvania and New Jersey. As Regional Sickle Cell Account Manager for these areas, I am working to expand blood donation opportunities in communities of color in an effort to grow the number of Black or African American blood donors to help patients in need, especially those batting sickle cell disease.

In order to meet these goals, I am working to build partnerships with Black businesses, Black community-based organizations, educational institutions, Black churches, healthcare facilities and government organizations to host blood drives in convenient locations. My goal is to provide Black and African Americans who want to give blood with donation opportunities in their communities. 

Working in the community and educating people of color is at the core of my passion and experiences. I strive to build trust, share information, create a space for opportunity and work collaboratively to engage new Black and African American donors to help save lives.

The ongoing COVID-19 pandemic has compounded the challenges for patients with sickle cell disease as they face new concerns around availability of care and access to needed blood products for their treatment. Donors who are Black play a critical role in helping people with sickle cell disease. It is essential that the blood they receive be the most compatible match from someone of the same race or similar ethnicity.

In Philadelphia and New Jersey, Red Cross blood donations from individuals who self-identify as Black or African American are labeled with a blue tag to indicate they may be a match for sickle cell patients. Additional testing is performed on these donations to match them as closely as possible with patients needing a transfusion.

I invite you to join us for two upcoming Blue Tag Sickle Cell Community Blood Drives in commemoration of Black History Month:

• Feb. 17, 10 a.m.-3 p.m. at the Red Cross Blood Donation Center, 700 Spring Garden St. in Philadelphia. The drive is sponsored by Philadelphia Commissioner Omar Sabir and UNCF Philadelphia Branch. Schedule an appointment here.
• Feb. 23, 11 a.m.- 4 p.m. at Mercer County Community College at Trenton, Kerney Hall, 102 N. Board St., Trenton, N.J. Schedule an appointment here.

Please consider scheduling an appointment to donate blood in commemoration of Black History Month and throughout the year. Every donation makes a difference! Visit RedCrossBlood.org to schedule an appointment. 

Editor’s Note: In commemoration of Black History Month, the American Red Cross is joining organizations across the country to focus on the importance of health and wellness in our Black communities. Throughout February, we’ll be sharing information about our Sickle Cell Initiative, stories from those impacted by sickle disease and ways that community residents can help.