Young Adults with Sickle Cell Disease Need Extra Support

Sickle cell disease is an inherited blood disorder. About 100,000 Americans are diagnosed with the disease, which can cause serious health problems. Access to health care is vital for these individuals, especially in early adulthood.

Crawford Strunk, MD, pediatric hematologist/oncologist, explains, “There’s a period from the ages of about 16-25 as patients are transitioning from pediatric care to adult care, that leaves them at a much higher risk for morbidity and mortality related to their disease. There’s a much higher incidence of death in that age group than there is at either side of that age group.”

Ensuring that young adults with sickle cell disease get the care they need is vital to helping them live their healthiest, now and in the future.

Understanding the Disease

Sickle cell disease is the most common form of an inherited blood disorder, and it impacts Black Americans at much higher rates. The disease changes red blood cells in the body from round and flexible to stiff, sticky and sickle-shaped. These cells can’t travel through blood vessels well and break down quickly.

The most common problems associated with sickle cell disease include anemia and blockage of the flow of blood in the tissues. It can cause swelling, pain and other complications. Over time, because of sickling of the red blood cells, patients can also develop chronic organ damage to almost any organ. Bone, kidney, lung and spleen are the most common sites of chronic damage.

Managing the Life-long Condition

Sickle cell disease is typically diagnosed at birth through a routine blood test. There is no cure, but it can be treated. Children with the disease may need preventive therapy such as prophylactic antibiotics, immunizations and screening for stroke risk and other known complications.

As individuals reach adulthood, they may find it challenging to find health care to meet their needs. In fact, only a few adult sickle cell clinics exist nationally. Those clinics report reduced emergency center visits, hospitalizations, and a reduced rate of long-term complications for their patients.

According to the Centers for Disease Control and Prevention, people with sickle cell disease have less access to comprehensive team care than people with hemophilia and cystic fibrosis, even though sickle cell disease is more common.

“Nationally, there are not a lot of medical providers with the experience or expertise to care for patients with sickle cell disease,” said Dr. Strunk. “It’s important to have a continuity of care as pediatric patients become adults. Their medical needs change and they are also glad to visit an adult office instead of a pediatric office in their 20s.”

ProMedica’s Adult Clinic

Adult clinics, such as the ProMedica Comprehensive Adult Sickle Cell Clinic, can address the unique issues of adults with sickle cell disease. This may include coordinating care under the direction of a hematologist, reviewing medications, providing maintenance infusion services and connecting patients to relevant social services.

The ProMedica Comprehensive Adult Sickle Cell Clinic opened in 2019 at ProMedica Toledo Hospital. It is the first adult-focused sickle cell clinic in northwest Ohio.

“It’s really important for individuals of all ages to be able to access care at a comprehensive sickle cell center,” explains Dr. Strunk. “At our clinic, we get to know our patients and can help with ongoing care, as well as acute care needs.”

The ProMedica clinic accepts physician referrals as well as self-referrals from patients who would benefit from a comprehensive care setting.

Learn more about sickle cell disease and ProMedica’s Comprehensive Sickle Cell Clinics.