New clinic is 1st in Hampton Roads to specialize in care for adult sickle-cell patients
NORFOLK — From the outside, Olivia Tarrer’s illness is invisible. No one can see her bouts of stabbing hip pain or her compromised immune system, which leaves her vulnerable to viral and bacterial infections.
“When you’ve dealt with symptoms on and off your whole life, sometimes the pain doesn’t show up on your face that much,” said Tarrer, 18, who has sickle cell disease. “But this illness is never easy. When my pain is really bad, it’s hard to move at all.”
Like other young patients with the lifelong, inherited blood disorder, the Virginia Beach resident has received treatment at Children’s Hospital of the King’s Daughters in Norfolk. The thought of aging out of CHKD’s program was frightening, as Hampton Roads has had no sickle cell clinic for adults.
Many adult patients instead traveled to VCU Medical Center in Richmond or the Duke Sickle Cell Center in North Carolina, went to emergency rooms for crises or relied on community-based physicians not trained to handle all potential disease complications.
That changed this month, when Sentara Health and Macon & Joan Brock Virginia Health Sciences at Old Dominion University launched the Sentara-EVMS Comprehensive Sickle Cell Program in Norfolk on the campus of Eastern Virginia Medical School.
The multidisciplinary clinic brings together specialists in internal medicine, pain management and psychiatry to collaborate on comprehensive care plans for adults, as well as stay up to date on the latest medications and promising gene therapies. A social worker also is on hand to help with issues such as lack of transportation or insurance questions.
“There was no place for patients to safely transfer out of pediatric care,” said Dr. Madeeha Deo, the clinic’s medical director. “We had no kind of cohesive care for a disorder that literally affects every part of the body. Filling this gap has been long overdue.”
Sentara HealthDr. Madeeha Deo, right, the medical director for the Sentara-EVMS Comprehensive Sickle Cell Program, with medical assistant Sigrid Moore at the clinic. Courtesy of Sentara Health
Sickle cell disease, which overwhelmingly affects the Black community, refers to a group of inherited blood disorders that cause red blood cells — responsible for carrying oxygen throughout the body — to become misshapen.
No longer round and flexible, the abnormal cells are crescent-shaped, rigid and can’t move well through blood vessels. They can block blood flow to any part of the body, causing debilitating pain that many patients describe as feeling like shards of glass within blood vessels.
The disease’s wide-ranging list of possible complications includes anemia, damage to all major organs and joints, stroke and cognitive difficulties, skin ulcers, vision loss and a high risk of infections such as colds, flu, meningitis and pneumonia.
Most sickle cell patients are diagnosed as babies after inheriting a defective gene from both parents, who can be symptom-free carriers. They tend to endure frequent hospitalizations and may struggle with depression, anxiety, insomnia and post-traumatic stress disorder. While treatments are improving, average life expectancy remains more than 20 years shorter than for the general population, according to the Centers for Disease Control and Prevention.
Sentara HealthLeaders from the community, Sentara Health and Macon & Joan Brock Virginia Health Sciences at Old DominionUniversity recently held a ribbon cutting for the Sentara-EVMS Comprehensive Sickle CellProgram. Courtesy of Sentara Health
Tarrer, now a freshman majoring in film at New York University, missed nearly a third of her senior year of high school due to sickle cell complications. The night before she took a college entrance exam, she was on IV fluids for dehydration from a stomach virus.
Tarrer’s sister, Morgan, 14, also has sickle cell disease and mainly struggles with immune system deficiencies, although she has been relatively healthy for the past five years. A high school freshman, Morgan once needed a blood transfusion for what began as a common cold.
“These kids are tough, but there is a lot of fear that looms over their heads,” said Khristina Reid, Olivia and Morgan’s mother and executive director of the Virginia Sickle Cell Network, which runs support groups and educational programs for families.
The new adult clinic, Reid added, “means my girls will have a medical home to be loved, believed and treated with dignity by specialists who have chosen to be part of this program. My daughters won’t be left to find their own way.”
Of an estimated 100,000 patients in the United States, more than 90% are Black and between 3-9% are Hispanic or Latino, CDC statistics show. Those patient populations historically have had less access to recommended screenings and therapies, Deo noted, and too often are mislabeled as drug addicts if they ask for narcotic medications.
In Virginia, lawmakers only this year directed the Virginia Department of Health to establish a statewide registry of sickle cell cases to better determine total number and regional distribution. The VDH estimates that 1 in 325 Black Virginians are affected.
Treatment plans can include opioids or over-the-counter painkillers and anti-inflammatories, heating pads and massage for pain, blood transfusions, physical therapy to improve mobility, mental health counseling and medication for damage to individual organs and joints.
Patients also can be candidates for a bone marrow transplant if they are lucky enough to find a suitable donor. And in 2023, the FDA approved two gene therapies that work in different ways to stop red blood cells from becoming sickle-shaped. Both are meant to be a one-time curative fix, although researchers must still collect long-term data to prove that.
“There’s so much promising research going on,” Deo said. “I’m seeing patients living well past 40 or 50, and I’m grateful that our clinic is now here to help more people.”
Olivia Tarrer takes comfort in that fact, too, as she begins the process of transferring out of pediatric care. To help others better understand her disease, she also is making a documentary featuring sickle cell patients at different stages of their lives.
“There needs to be a lot more awareness,” she said, “so more people are treated with compassion and respect.”
The Sentara-EVMS Comprehensive Sickle Cell Program is based at Hofheimer Hall, 825 Fairfax Ave., Suite 445, in Norfolk. Potential patients can request a referral from their physician or contact the clinic directly at 757-446-8980 or online at evmsmedicalgroup.com/sicklecell.
Alison Johnson, [email protected]
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