Sickle cell patients are often misdiagnosed. Researchers, lawmakers are trying to change that

Sickle cell disease is one of the most common genetic conditions in the United States, yet few understand it.

Because it doesn't get much attention, patients with the disease are often misdiagnosed mistreated. Now, lawmakers and researchers are trying to make a difference.

An emergency room doctor turned away 46-year-old Katrina Nelson when she was in acute crisis with chest syndrome due to sickle cell anemia.

"He told me that I was a drug seeker. He dismissed me, he sent me home," she said.

Misinformation and the stigma surrounding sickle cell anemia nearly cost Nelson her life.

"Sickle cell is a monolithic and very singular type of disease, but it affects different people differently," said Dr. Resa Caivano with the Sickle Cell Center for Excellence at Kaiser Permanente.

Caivano said the genetic condition affects 100,000 people in the U.S. each year. The disease disproportionately affects Black Americans, but it can affect people of all races.

It occurs when blood cells form into sickle shapes. When it clots, it causes painful episodes.

"It can cut off oxygen to organs, causing chronic pain, acute pain and also organ damage over time," Caivano added.

Although stroke is a common complication, a new CDC study finds less than half of children with sickle cell disease get recommended screenings for stroke.

"Especially in children with sickle cell, they could be experiencing a pain crisis and at the same time having a minor stroke that is not seen. And it can manifest as looking like a learning disability or behavioral issues and things of that nature," Caivano said.

Nelson has survived a pulmonary embolism and deep vein thrombosis. Consistent and coordinated treatment helps her manage sickle cell disease, but she knows a lot of patients cannot find the appropriate care.

Lawmakers just introduced the Sickle Cell Disease Treatment Centers Act to help improve patient access to multidisciplinary care teams. There are less than a dozen sickle cell centers in the Los Angeles metro area.