Since 1957, the Sickle Cell Disease Foundation (SCDF) has been addressing the needs of individuals living with the challenges of sickle cell disease.
Sickle cell disease is a genetic blood disorder that causes red blood cells to be curved like a crescent rather than flexible and round. These sickle-shaped red blood cells become stuck in small blood vessels restricting blood supply and depriving the body of oxygen. This can cause major organ damage and excruciating pain. Both parents must carry the trait for a child to be born with sickle cell disease. There is currently no cure for sickle cell disease, although treatment and medical care can increase survival rates and improve quality of life.
Based in Ontario for the last seven years to better serve the Inland Empire, SCDF is a full-service agency providing free services for people with sickle cell disease and their families. Clients are provided direct services, education, counseling, behavioral health therapy, youth programs, and assistance transitioning from pediatric to adult care. The organization also tries to address transportation, housing and food insecurity.
SCDF has an active roster of approximately 2,000 individuals receiving either long-term or one-time support. It is estimated that sickle cell disease affects 1 out of every 365 Black or African American births and 1 out of every 16,300 Hispanic American births, according to SCDF.
Through the Networking California for Sickle Cell Care Initiative and in partnership with the Center for Inherited Blood Disorders (CIBD), the organization has opened 12 clinics with partners to increase the quality of care. The newest was opened this year at Arrowhead Regional Medical Center.
“These clinics are so important because the clinicians really understand their disease. Patients aren’t immediately dismissed, and they feel like they are being supported,” the organization’s President and CEO Mary E. Brown said. “All of us deserve good health care.”
Since the hallmark of sickle cell disease is pain, patients are often seen as seeking drugs, according to Brown. Patients who have lived with sickle cell disease know what pain medication they need and how much but are often challenged when they must go to the emergency room. In addition to educating families, SCDF also has workforce development programs to educate doctors, nurses and nurse practitioners so that the disease is better understood.
The work that SCDF accomplishes is often lifesaving, according to Brown. Recently, she received a call from the mother of a 30-year-old woman living with sickle cell disease who needed a liver transplant and was being sent home for hospice care. Brown contacted Dr. Diane Nugent of CIBD, and they were able to find her a liver and get her a transplant in a matter of days. She is now recovering nicely.
“If she had been in hospice she would have passed away,” Brown said. “When something like this happens, I can call Dr. Nugent and we figure it out and do something about it. We’re not afraid of challenges and that’s why we are still here.”
Recently, the Sickle Cell Disease Foundation received a grant from the Black Equity Initiative. Despite the organization’s longevity and the need in the community, the organization is not well-known according to Brown. SCDF welcomes donations from the community to support its many programs including Camp Crescent Moon, a free summer camp for children with sickle cell disease and Camp Gibbous for teens.
“We are intentional about making sure that people with sickle cell disease get the access and the care that they deserve to have,” Brown said. “All of our efforts from the board level and throughout the organization are about the patient first.”
More information: https://www.scdfc.org or (909) 743-5226
This story originally appeared in the Press Enterprise June 2023.
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