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.

Blood drive honors child with sickle cell disease

By Jenny Farley

Six-year-old Leghend Martin. Submitted photo

Leghend, with a name as unique as he is, just started first grade and told his mom he had a great first day. He also told her to remove some of the games from his phone because he wanted more educational apps for the school year. He’s six years old.

Kieshia Martin describes her son as smart and curious. “He’s at that age where he questions everything,” she said.

Leghend is tech savvy and enjoys things other kids love like basketball, swimming and Boy Scouts. He also deals with something they don’t have to. He has sickle cell disease.

Kieshia learned her son had the genetic blood disorder just a couple of days after he was born when the hospital ran routine blood tests.

“I was devastated. It was like a punch in the gut.”

People with sickle cell disease have red blood cells that are hard, in the shape of a crescent, instead of being soft and round. That makes it hard for blood to carry oxygen throughout the body. They need blood transfusions to manage health complications like anemia, organ damage and terrible pain.

Kieshia says sometimes it’s hard to tell if Leghend is hurting. “He’s a jokester.” She said he does have pain in his stomach and legs and can’t go long periods of time in activities that involve running or jumping.

“He gets winded.”

Last Fourth of July, Leghend ended up in the hospital with an enlarged spleen and got pneumonia while he was there. “It’s hard to see your kid like that.” He needed his first two blood transfusions. “If there wasn’t a donor I don’t know what could have happened.”

Having to rely on the kindness of strangers to save your son can be overwhelming.

Kieshia says donating blood is about “people willing to help someone they don’t know.”

One in 3 African American blood donors will be a match for patients who have sickle cell disease. She would donate her own blood to her son but “I’m not a match,” she said.

The Red Cross is working to increase the number of blood donors who are Black to make sure patients with sickle cell disease get the blood they need to thrive and survive.

On September 14th, a blood drive will be held in Leghend’s honor from 2-7 p.m. at the Ricketts Center at 658 Beech St. in Pottstown. Donors are needed. Schedule an appointment here.

Kieshia wants for Leghend what all parents want for their kids. “I never want him to struggle.”

She has dedicated her life to seeking out the best medical care, no matter how far she has to drive to get it. She’s also searching for a “forever blood donor,” someone who is the perfect match for her son and can donate throughout his life.

Kieshia plans to go to nursing school to learn more about how she can help Leghend and communicate more effectively with his many specialists.

For now, she tells him what he needs to know by sharing “little books and pamphlets” about sickle cell disease that a six year old can understand. She never wants him to feel like a victim. “I want him to be as normal as possible,” and she said, “I try to make each moment count.”

September is Sickle Cell Awareness month. To schedule an appointment to donate blood, download our free Red Cross Blood Donor App, visit RedCrossBlood.org or call 1-800-REDCROSS.

Red Cross laboratories and dedicated scientists play a vital role matching lifesaving blood for patients with sickle cell disease

Written by Judith Weeks with Photography by Bill Thawley

A person with Sickle Cell Disease can receive as many as 100 units of blood in one year. These blood transfusions are necessary to treat complications from this condition. But the transfusion itself can cause complications. Blood from a pool of donors is matched best as possible; however, a person with Sickle Cell Disease may develop an immune response making it more difficult to find donors. Most persons with Sickle Cell Disease are African American and the most compatible blood generally comes from African Americans.

American Red Cross Laboratories in Philadelphia play a critical role typing blood donated by African Americans.

The National Molecular Laboratory (NML) is the only American Red Cross Laboratory providing genotyping of donors. A person’s genomic DNA contains information that is a more comprehensive predictor of a close blood match than the usual serology typing. African American donors who are genotyped are given the opportunity for membership in the American Rare Blood Donor Program, a national initiative to ensure blood is available for those who need it.

Dr. Margaret Keller, pictured below, Executive Director, National Laboratories, explained there is a shortage of African American donors. Last year the American Red Cross began the Sickle Cell Initiative to increase the number of active African American donors.

Test tubes of donor’s blood are delivered to the NML for genotyping. Giancarlo Rendon, pictured below, examines a sample of DNA purified from whole blood.

Below, Melissa Verstegen places tiny drops of donor’s DNA on a glass slide.

Dr. Martin Chou, pictured below, Director of the NML, explains the MALDI TOF analyzer used for identification of DNA in each donor’s sample

Below, Julia Nezhinsky places the slide with DNA into the MALDI TOF analyzer.

Below, Daria Buono analyzes DNA data from the MALDI TOF analyzer identifying genes carried by a donor.

The National Reference Laboratory for Specialized Testing (NRLST) has expertise for specialized serology. Serology is used for typing ABO and Rh blood groups. This laboratory takes serology a step further with a panel of antibodies for typing blood units from African American donors selecting the best donor for patients with Sickle Cell Disease.

Below, Dexter Facey, Manager, places cartridges into an automated system for typing African American blood donors.

The Immunohematology Reference Laboratory (IRL) is one of forty-five American Red Cross IRLs nationwide. This laboratory has the resources for red blood cell serology typing of rare blood types. It selects blood units from African American donors that best match a patient with Sickle Cell Disease.

Below, Marie Dolce types blood units from African American donors.

Below, Paul Mansfield, IRL Director, and Leslie Pride review blood typing results before releasing blood units sent to hospitals where patients are transfused.

Paul explains “the American Red Cross Sickle Cell Initiative has brought the entire organization together focusing on serving patients with Sickle Cell Disease.”

The work of these laboratory scientists is critical! Lives are saved by advanced genotyping and serologic typing performed at the American Red Cross, allowing the best possible blood products for persons with Sickle Cell Disease.

To learn more about sickle cell disease, check out the following links:

• Philadelphia’s ‘Blue Tag Program’ transforms sickle cell treatment
• Red Cross initiative aims to increase blood availability for patients with sickle cell disease
• American Red Cross: History of Sickle Cell Disease

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.

Sickle Cell Awareness Month: Red Cross announces ‘Joined by Blood’ initiative to help increase compatible blood donations for patients

By Alana Mauger

During Sickle Cell Awareness Month in September, the American Red Cross emphasizes the importance of a diverse blood supply to help meet the needs of those with sickle cell disease – the most common inherited blood disorder in the U.S.

Sickle cell disease impacts more than 100,000 people across the country, most of whom are of African descent. Regular blood transfusions are critical to managing extreme pain and life-threatening complications faced by many. Unfortunately, they may develop an immune response against blood from donors that is not closely matched to their own. However, because most individuals who are Black have unique structures on their red blood cells that are not often found in other donor populations, 1 in 3 African American blood donors is a match for people with sickle cell disease.

Seasonal changes can trigger pain crises for those battling sickle cell – possibly increasing the need for lifesaving blood transfusions. As summer ends, book a time to give blood by using the Red Cross Blood Donor App, visiting RedCrossBlood.org or by calling 1-800-RED CROSS (1-800-733-2767). As a thank-you, all who come to give through Sept. 18 will get an exclusive Red Cross T-shirt, while supplies last.

Life-threatening complications 

Sickle cell disease distorts soft, round blood cells and turns them hard and crescent-shaped, which can cause severe pain. “When cells harden, they can get caught in blood vessels, potentially leading to stroke and organ failure,” says Dr. David Moolten, Red Cross Medical Director for the Penn Jersey region. “Transfusions provide healthy blood cells, unblocking blood vessels and delivering oxygen, minimizing crises patients with sickle cell may face.”  

Like many individuals living with sickle cell disease, Tahirah Austin-Muhammad, COO and co-founder of the Crescent Foundation in Philadelphia, says blood transfusions are an important part of her ongoing treatment – but it has to be the right match. She has been hospitalized for reactions to transfused blood more than once. She has also had to wait days for transfusions when a match wasn’t readily available.

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

Joined by Blood

To help ensure patients have the blood products they need, the American Red Cross is working with partners in the Black community to grow the number of blood donors who are Black through the sickle cell initiative, which launched in 2021. In the first year of the initiative, the number of first-time African American blood donors who gave with the Red Cross increased by 60%. In September and October, the Red Cross launches Joined by Blood, a fall component of the initiative where the Red Cross is teaming up with community organizations, like the National Pan-Hellenic Council and others, to host blood drives and inspire donors who are Black to give blood to support patients with sickle cell disease. To learn more, visit RedCrossBlood.org/OurBlood.

Upcoming blood donation opportunities

The Red Cross has dozens of community blood donation opportunities every day in the Greater Philadelphia Region, including the following sickle cell-focused blood drives. For a full list, visit RedCrossBlood.org.

• Sept. 10, 10 a.m.- 3 p.m. – Masons Prince Hall, 4301 N. Broad St., Philadelphia
• Sept. 19, 1-6 p.m. – Temple University HealthLink, Howard Gittis Student Center, 1755 N. 13th St., Philadelphia
• Sept. 21, 10 a.m.-8 p.m. – University of Pennsylvania Hospital, 1 Convention Ave.
• Sept. 23, 1-6 p.m. – Temple University Kappa Alpha Psi Fraternity, Howard Gittis Student Center, 175 N. 13th St., Philadelphia
• Sept. 24, 10 a.m.-3 p.m. – Delta Sigma Theta Sorority, Inc., 301 N. Jackson St., Media
• Sept. 24, 9 a.m.-2 p.m. – Bethlehem Baptist Church, 712 Penllyn Pike, Spring House
• Sept. 28, 10 a.m.-3 p.m. – CHOP Sickle Cell Parent Network at PA Senior Center on the Avenue of the Arts, 509 S. Broad St.
• Sept. 28, 1-6 p.m. – Chester Senior Center, 721 Hayes St., Chester

Testing for sickle cell trait

At a time when health information has never been more important, the Red Cross is screening all blood, platelet and plasma donations from self-identified African American donors for the sickle cell trait. This additional screening will provide Black donors with an additional health insight and help the Red Cross identify compatible blood types more quickly to help patients with sickle cell disease. Donors can expect to receive sickle cell trait screening results, if applicable, within one to two weeks through the Red Cross Blood Donor App and the online donor portal at RedCrossBlood.org.   

To learn more about sickle cell disease, check out the following links:

• Philadelphia’s ‘Blue Tag Program’ transforms sickle cell treatment
• Red Cross initiative aims to increase blood availability for patients with sickle cell disease
• American Red Cross: History of Sickle Cell Disease

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.

Profile: Jawanda Hargrove – So much to live for, so much to share

By Nancy Degnan

Jawanda Hargrove shared her story with news media during Sickle Cell Awareness Month. Photo by Alana Mauger

Jawanda Hargrove has a full life taking care of her son, enjoying her family, and going to work each day. When you meet Jawanda, you find a caring person with great expression.

“I have a job, a son and a family. I have a life I want to be here for and I am passionate about it; it is my life.”

The “it” that Jawanda references is sickle cell disease.

At eight months old, Jawanda was diagnosed with sickle cell disease. As her hands and feet began to swell, her parents took her to be treated and received the news. Jawanda is thankful for her ability to attend school and graduate with her class due to diligent parents and the support of Children’s Hospital of Philadelphia (CHOP). CHOP creates a packet about sickle cell disease that helped to educate Jawanda’s community beyond her parents and her home.

“CHOP helped me medically and socially,” Jawanda shared.

With all the challenges presented to Jawanda, she is always appreciative.

Blood transfusions saved my life

An exciting next step was happening for Jawanda as she prepared to bring new life into the world. As a sickle cell disease patient, she knew she was immediately considered high risk.

“I had a normal pregnancy, until it wasn’t,” Jawanda said.

Jawanda’s son was born seven weeks premature. While Jawanda’s son was in the neonatal unit receiving care, Jawanda went into a sickle cell disease crisis. Her hemoglobin plummeted, and she was in the hospital for four days. Blood transfusions saved Jawanda’s life.

Going above and beyond

“If you were to look at me, I do not present as sick,” says Jawanda.

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. Patients can experience complications such as severe pain, anemia, infections, stroke and organ damage. Blood transfusions are the primary treatment for individuals living with sickle cell disease.

For Jawanda, educating the medical professionals and the public about sickle cell disease is key to ensuring the disease state is recognized. Jawanda plays an active role in providing education about sickle cell disease and has compassion for others that are living with the disease. She takes time out of her busy schedule to humanize patients with the disease by talking with health care professionals (first year residents) at Penn Hospital as a person, not a patient. Her hope is when a sickle cell disease patient presents at the emergency room or hospital, they will be met with a prepared medical staff with awareness of the symptoms leading to quick action – the need for life giving blood.

When asked what she would say to someone giving blood, Jawanda replied, “Thank you for saving lives.” She also noted the importance of having blood donations from the African American population because patients who require regular blood transfusions are best served when blood donors are more closely matched to their own.

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.

Philly-based Crescent Foundation aims to reform sickle cell patient care

By Kay Bennett

Crescent Foundation Co-founder and Chief Marketing and Communications Officer Ediomi Utuk-Lowery. Photo by Alana Mauger

Ediomi Utuk-Lowery is a co-founder of Crescent Foundation and also serves as the nonprofit’s chief marketing and communications officer. The focus of her work—and the main mission of the organization—is to advocate for and support people affected by sickle cell disease, as well as their loved ones and caregivers.

Sickle cell disease, an inherited disorder of the red blood cells, affects African Americans at vastly higher rates than people of other ethnicities. About one in 13 African American babies is born with sickle cell trait, the CDC estimates.

As adults living with sickle cell disease, all of Crescent’s cofounders understand the challenges firsthand, and Utuk-Lowery and her colleagues have identified numerous pressing needs in their community. One of their goals is to help younger sickle cell patients navigate the transition from pediatric or adolescent care to the adult care system. This initiative, called Bridging the Gap, uses a compassionate, holistic approach to support 18- to-24-year-olds faced with the daunting prospect of advocating for themselves within a complex health care environment. They need to understand insurance, create and reach wellness goals, and address their health care needs in the workplace. For these young adults, Bridging the Gap is a valuable resource.

A second program, Crescent Cares, provides case management support. Managing a chronic condition can be complicated; to ease the way, the foundation’s community health workers serve as liaisons to help sickle cell patients and their families coordinate their medical and social service needs. They may make home or virtual visits, help with prescription requests, arrange for transportation, and more.

Crescent’s third key initiative—called One Gene, One Life—provides training and education for the next generation of health care practitioners. It was developed as an immersion program to give medical students insight into the daily lives of sickle cell patients. Crescent Foundation members visit genetics classes, health programs, vending events, and other settings to provide info and dispel common myths. They also talk about archaic language used to describe sickle cell disease.

Because sickle cell patients look to their health care teams for compassion, support, and understanding, this unique program aims to show providers how the disease can truly impact patients’ lives every day. Each Crescent advocate becomes a face for sickle cell awareness, and the idea is to arm future physicians with compassion and knowledge about this invisible condition. Utuk-Lowery says the initiative is all about reaching out to “the up-and-coming stars who are going to be caring for us at one point or another.”

The Crescent Foundation has received an outpouring of love and support for its advocacy efforts, Utuk-Lowery notes. But there’s still work to do: From making calls on behalf of a patient or advocating for individuals in the prison system living with sickle cell, Utuk-Lowery says no task is too big or too small for the team to take on.

Want to know more? Go to crescentfoundationscd.org.

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.

Profile: Shaun ‘Sturdy’ Griggs advocates for sickle cell awareness

By Kay Bennett

Shaun “Sturdy Griggs” spoke at a Crescent Foundation blood drive held at the Red Cross House last fall. Photo by Alana Mauger

Shaun “Sturdy” Griggs is a passionate advocate for sickle cell awareness. Last fall, Griggs spoke about his experiences at Red Cross House in Philadelphia, where a blood drive was being hosted by the Crescent Foundation, a Philly-based nonprofit serving the sickle cell community.

Griggs has been living with sickle cell disease his entire life. When he was 3 years old, his mother noticed swelling, and he seemed to be in severe pain. After a battery of tests at the hospital, the diagnosis came: type SS sickle cell disease.

“Everyone’s pain is different. Mine was like a heartbeat – if you can picture 100 knives stabbing me in the stomach. BOOM! BOOM! BOOM!” he shouted, thrusting his hands toward his abdomen in a stabbing motion.

Such an episode, known as a sickle cell crisis, is one of the major red flags for SCD. A crisis occurs when the sickle-shaped cells cannot flow freely through the bloodstream, causing a blockage. This blockage can lead to severe discomfort and pain, and the repercussions often include decreased flow of oxygen throughout the body and organ tissue damage.

Griggs’s adversities regarding sickle cell disease are often the result of a lack of public knowledge about the condition. Time and again he has found himself explaining the nature of the disease to others, and it was this uphill struggle to increase recognition of the disease that inspired him to become an advocate for Sickle Cell Awareness. He fiercely believes that sickle cell disease should receive more widespread attention.

To illustrate the discrepancy in awareness, Griggs compared sickle cell disease with cancer. Many people, especially health care professionals, are acutely aware of symptoms affecting cancer patients and have a good familiarity with effective treatments. But with sickle cell disease, care teams in hospital settings often need to be educated by their own patients. Patients may have to strongly advocate for themselves, emphasizing the severity of their pain and the lifesaving treatments they need.

Griggs also talked about the feelings of invalidation sickle cell patients may experience. Hospital staff may not fully understand the disease, so they often fail to understand the severity of the associated pain. Griggs tends not to cry in most situations—including health care settings. People should not have to be in tears, he says, to have their pain taken seriously.

“You wouldn’t be able to tell I have [sickle cell disease] by looking at me, but it’s shaped my life,” he said. “The pain is random. It can happen at any time.”

At one point, the lack of sickle cell awareness even threatened Griggs’s life. He was in a juvenile detention facility and began to have a crisis, but the guards and medical staff refused to get him the treatment he needed. As a result of that failure to receive timely medical attention, he walked with a limp for a year and now has permanent swelling in his knee.

Griggs’s frustrations with such health care disparities are what motivates his outspoken advocacy today. When a friend introduced him to Crescent Foundation co-founder Tahirah Austin-Muhammad, the two quickly bonded over their shared experiences with sickle cell disease. Eventually Griggs began speaking at various events held by the foundation. He describes Tahirah as a “great advocate” for sickle cell awareness.

Sickle cell-focused blood drives, like the annual one hosted by the Crescent Foundation, are vital to the sickle cell disease community, Griggs says. “Not a lot of people notice that we [sickle cell patients] actually need blood transfusions,” he said, “and some of us need blood transfusions more often than others. This means a lot just to spread the word.”

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.