Sufferers are frustrated that doctors specializing in adults with sickle cell disease are hard to find in LA County.
"You get slow throbs and it builds and then feels like someone is punching you, then stabbing you, then a building is coming down on you," said Eric Williams, a 25-year-old living with the genetic disease.
Nearly 100,000 Americans live with sickle cell disease, according to the Centers for Disease Control and Prevention.
Symptoms include widespread pain, fatigue, organ failure and a shortened life span. A person with sickle cell will usually live to the age of 50.
The diease affects one in 500 African Americans, but can also affect Hispanics.
As a child, Williams said he had more access to pediatricians who specialized in the disease.
As an adult, it’s considerably harder for him to find specialists in LA County that treat adults.
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Dr. Susan Claster is one hematologist in Orange County who does treat adults, but has trouble handling a huge flux of patients by herself.
"I can't see everybody, and we need to find others who are interested in seeing these patients," Claster said. "That really frustrates me."
California and eight other states recently received grant funding to expand treatment for sickle cell patients.
Williams, set to attend nursing school, said he won't let the disease slow him down, and hopes to inspire others.
"I would like to inspire them by having them see you can go to college and get a job and be part of mainstream society - you just have to figure out your way to do it," Williams said.
