Understanding Sickle Cell Disease

April 20, 2023. Patapsco Valley State Park, Ellicott City, Maryland. David III, Skylar, Omowunmi, David Jr. and Donovan Dandridge support each other in their family’s battle with sickle cell. Photo by Jason Colston/American Red Cross

cvv news l July 24, 2023

(NAPSI)—Nearly 100,000 people in the U.S. are affected with sickle cell disease—maybe even someone you know—yet there’s very little general awareness of the disease in part because it’s mostly not visible. In addition, it affects each individual differently—symptoms and complications of the disease range from tolerable to severe. 

One Family’s Story

David Dandridge, Jr., was born with sickle cell disease but was not diagnosed until the age of two after suffering a pain crisis. The most common genetic blood disorder in the U.S., sickle cell disease can cause severe pain, tissue and organ damage, and even strokes. For patients battling the disease, regular blood transfusions are critical to managing extreme pain and life-threatening complications.

“Whenever I have received a blood transfusion, it was because it was a matter of life or death,” said Dandridge. “That is very scary to think about.”

When he was 18, the painful disease disrupted his dreams of joining the military and becoming a law enforcement officer, but he persevered past his pain and successfully completed college at Morgan State University and later University of Phoenix. He also became a proud member of Phi Beta Sigma Fraternity, Inc., married his high school sweetheart and became a father.

Over the years, Dandridge received countless blood transfusions to treat pain, complications and multiple transient ischemic attacks (TIA), or mini strokes. Frequent transfusions can make finding compatible blood types more difficult when patients develop an immune response against blood from donors that is not closely matched to the blood of the recipient. Yet, 1 in 3 African American blood donors are a match for people with sickle cell disease—making the need for blood donors who are Black critical to the ongoing care of sickle cell warriors such as Dandridge. 

“[When] my body rejects blood from the transfusions, [it] caus[es] the need for more blood,” said Dandridge, who has type B positive blood. “Thank God, I have never been in a situation where I needed blood and it was not available. However, I have heard of occasions when blood transfusions were [postponed] due to a lack of blood donations.”

In addition to his own need for compatible blood units, Dandridge also has to consider the transfusion needs of his family. In 2007, while pregnant with their first child, his wife Omowunmi discovered she was a sickle cell trait carrier through prenatal testing. Though sickle cell trait carriers do not typically experience signs of sickle cell disease, they can pass the sickle cell gene on to their children. Due to the couple each having an abnormal hemoglobin S gene, their children would have a 50% chance of inheriting either sickle cell disease or sickle cell trait. For the Dandridge family, all three of their children—Skylar, David III and Donovan—were born with sickle cell disease.

Today, the Dandridge family know first-hand the importance of having access to a strong and diverse blood supply when they need it.

“My mind is always in overdrive [about the availability of blood] because sickle cell disease can impact the body of patients differently and at any time,” he said.

What You Can Do

Dandridge often encourages those who are eligible to schedule an appointment to donate blood and for those on the fence, he believes a picture is worth a thousand words.

“I would show them pictures of my children as well as a picture of myself following the strokes and let them know that if it weren’t for [blood] donations, I and others like myself would possibly die. Anyone who can give, please consider doing so. You never know whose life you may be saving.”

How to Help

To schedule an appointment to give blood, visit RedCrossBlood.org/OurBlood or call 1-800-RED-CROSS (1-800-733-2767). As part of its Sickle Cell Initiative, the Red Cross is providing sickle cell trait screening on all blood donations from self-identified African American donors.

Black Doctors March to Kaiser Medical School to Shine a Spotlight on Institutionalized Racism in Medicine

By Solomon O. Smith | California Black Media | Posted: September 09, 2022

Aysha Khoury gets emotional as she speaks in front of her former workplace the Kaiser Medical School in Pasadena. A founder of Black Doc Village, she is suing the school for racist practices. Pasadena, California, Friday August 26, 2022 (by Solomon O. Smith)

The #BlackDocsBelong campaign held a rally in Pasadena last Friday calling on Black medical doctors to join their movement dedicated to keeping and growing the ranks of Black physicians.

“We actively support and advocate for Black trainees and physicians facing workplace discrimination,” states the website of Black Doc Village, the group organizing the rally. “We aim to expand the Black physician workforce to improve health outcomes in the Black community.”

The national kickoff for the not-for-profit organization Black Doc Village, began with a breakfast at the Pasadena Hilton hosted by two Black Doc Village cofounders: nephrologist Vanessa Grubbs and educator and physician Aysha H. Khoury.

About 100 young medical students and staff gathered to march to the Kaiser Permanente Bernard J. Tyson School of Medicine. A wide range of ethnicities came to provide support.
Student who chose to remain anonymous shared the contents of a message about the protest from the Kaiser School of Medicine.

“Students who choose to participate in the demonstration tomorrow will not be penalized or retaliated against for doing so,” reads an email by senior associate dean for student affairs Dr. Anne M. Eacker, “and absence from class or clinical sites tomorrow morning will be considered an excused absence.”

The Kaiser School of Medicine was named the 6th Most Diverse Medical School in the nation and ranked 2nd in California by U.S. News & World Report after the School of Medicine at the University of California Davis.

With handmade signs and white lab coats the rally set off for a two-block march to the medical school. Walking in a single file line the doctors raised their voices in a shouted call-and-response chant.

“Stop pushing,” they shouted followed by the comeback, “Black docs out.”
Black medical professionals from across the country came to support the Black Doc Village rally.

Dr. Robert Rock, who practices on the East Coast, says he was inspired to go into medicine by his grandmother and the strength she exhibited when she “refused to be disrespected” by medical professionals during her care. He witnessed a racist act aimed at a patient which he described as shocking.

“We were deterred from talking about it,” said Rock. “It was then that I lost my faith (in the system).”

Jessica Isom is a Boston-based psychiatrist and an advocate for equity and justice for BIPOC patients. She has been an outspoken resource and advisor in Diversity, Equity and Inclusion programs through her company Vision for Equality, which has worked with several major brands and medical institutions. She sees part of the issue as a flaw in the culture of medicine which makes changing it difficult.

Isom says resistance to change is “perpetuated through training” and that people may not be conscious that change is needed. She referred to an article written by Rhea W. Boyd, a pediatrician who has spoken before Congress about racism in the medical profession.
“People see it. The person who serves you your food looks like me. The person who provides you your medical care often does not, and that is an intentional process of segregation,” says Isom.

Doctors were not the only ones who want more Black physicians

Advocates Pressure Gov. Newsom to Fund Health Equity, Racial Justice in Final Budget

By Edward Henderson | California Black Media | Posted June 14, 2022

CBM) – On June 8, community leaders, public health advocates and racial justice groups convened for a virtual press event to urge Gov. Gavin Newsom to support the Health Equity and Racial Justice Fund (HERJ Fund).

The initiative supports community-based organizations addressing the underlying social, environmental and economic factors that limit people’s opportunities to be healthy — such as poverty, violence and trauma, environmental hazards, and access to affordable housing and healthy food. Health advocates would also address longstanding California problems related to health equity and racial justice problems.

The fund cleared a significant hurdle last week when the State Legislature included $75 million in their joint budget proposal. This means both the Assembly and Senate support the HERJ Fund and they will go into negotiations with the governor to seek his support to approve it.

“Our state boasts a staggering $97 billion budget surplus. If not now, when? Given the devastating impact of racism on the health and well-being of Californians of color it’s a travesty of the highest order that racial justice isn’t even mentioned in the Governor’s budget proposal,” said Ron Coleman, Managing Director of the California Pan-Ethnic Health Network.

Wednesday’s virtual community meeting and press event capped off a series of rallies held by supporters in cities across the state calling on Gov. Newsom to make room in his budget for the HERJ Fund.

Coleman facilitated the online event featuring representatives from service organizations speaking about their support for the fund and presenting plans for how the money would be used to support their shared mission of providing services to minority and underserved communities in California.

Jenedra Sykes, Partner at Arboreta Group, spoke about inequalities that exist in funding for smaller grassroots nonprofits and how traditionally larger, White-led nonprofits use state funds to subcontract with grassroots

nonprofits to provide services to communities of color at lower costs.

“The faith-based non-profits on the ground have the relationships, the access to those who are most vulnerable and marginalized among us who disproportionately have poorer health outcomes,” said Sykes. “This bill also evens the playing field a bit. Instead of going through the middleman of the established larger non-profits, funding will go directly to the people who are doing the work. The passion, the heart, the skills, the talents are there. It’s about the resources to fund these talents”

Coleman gave attendees an update on the status of the HERJ Fund’s path to inclusion in the state budget.

Now that the State Legislature has included the fund in their spending proposal for Fiscal Year ’22-23 (it was not included in Newsom’s “May Revise”), it must survive negotiations with the governor’s office before the June 15 deadline to finalize the budget.

A final budget needs to be in place by June 30, the last day for the governor to approve.

HERJ Fund supporters remain hopeful that funding for their program will be included in the final budget.

In the past, reservations have come from the Governor’s office supporting the fund came from questions around oversight, accountability and outcomes would look like. Updated mechanisms were added to the HERJ Fund’s proposal to alleviate those concerns and supporters of the fund believe that Governor Newsom is out of excuses.

“Our best shot at getting the HERJ Fund in the budget is now. We are hoping that all of you will keep the pressure on the Governor to ensure that this becomes a reality,” Coleman said. “If he does care about the intersections of health equity and racial justice then we will see funding.”

Attendees were encouraged to contact the Governor’s office and the Legislature to keep the pressure on them to include the fund. You can visit herjfund.org to learn more about the proposal and the effort to include it in the state budget.

Nadia Kean-Ayub, Executive Director of Rainbow Spaces, shared details about the valuable events and services community-based non-profits provide. She said there is no shortage of families in need who want to

participate in their organizations’ programs but, due to limited funding for transportation, many people never access services meant to help them.

“This tells me that when things are created in our communities, they are not making the impact we need in our Black, Brown and API communities,” Kean-Ayub said. I will continue to fight. To really make this grow, we need the state to understand that the true impact comes from the community and the people who are living these issues and who know how to help them.”

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