Several times a year, Lance Jones finds himself in paralyzing pain. He can't predict when a "crisis" will come on or which part of his body it will hit.
"If it happens in your knee, you will feel pain up and down that entire leg," he said. "If your shoulder starts to go into a crisis, then ... you can't even pick up a pencil to write your name."
Sometimes even powerful narcotics can't ease the pain and the 28-year-old musician ends up in the emergency room.
Jones has sickle cell disease, an inherited blood disorder that can cause — in addition to bouts of extreme pain — organ damage and strokes.
After years of long commutes to receive treatment, Jones recently became one of the first patients at a new sickle cell clinic at Martin Luther King Jr. Outpatient Center.
It's part of an effort by Los Angeles County to improve medical care for South L.A.'s poorest residents, nearly a decade after the hospital that served the region was forced to shut down.
King/Drew hospital was plagued by poor medical care, staff errors and a series of controversial patient deaths that earned it the nickname "Killer King." Yet the hospital still served as a lifeline for the region's largely black and Latino population.
Its replacement opened last year, but leaders of the new Martin Luther King Jr. Community Hospital are trying a new approach. Following a tenet of the Affordable Care Act, officials want to tackle people's health problems before they become sick enough to need a hospital visit.
Next to the new MLK hospital in Willowbrook, county officials have set up a public health clinic, a recuperative care facility that provides housing for homeless recovering from medical treatment, a psychiatric urgent care center, and, as of last month, a sickle cell clinic.
"It touches a disease that is often overlooked and really an important one in a community like South L.A., said Dr. Mark Ghaly, who oversees the MLK medical campus for L.A. County's Department of Health Services. "The clinic really takes the life of the patient ... and tries to care for them in a more person-centered way, not just a patient-centered way."
Sickle cell disease was once thought of as a childhood illness because most of those affected died as children. Improved treatments have increased life expectancy, but many patients still don't live past their 40s.
Managing sickle cell disease requires frequent doctors visits, which many in the region don't have time for or can't afford, experts say.
"Some people are just wondering where their next meal is coming from in South L.A.," said Dr. Susan Claster, the clinic's hematologist. She said that many of the patients who've shown up at the new clinic were sick after forgoing treatment for years.
There are an estimated 5,100 sickle cell patients in Southern California, most of whom are African American.
Patients with sickle cell disease have abnormal red blood cells; instead of the cells being round and soft so they can easily move through the body and deliver oxygen, they become rigid and sickle-shaped.
The C-shaped cells die off early, leading to a shortage of oxygen in the body. The cells also clog small blood vessels, causing a variety of problems that worsen with age, including blindness and damage to the heart and spleen.
Hematologists who specialize in treating sickle cell disease check patients' blood pressure and test their urine and blood to make sure they're not developing kidney infections, anemia or suffering from silent strokes. They also prescribe pain medications and hydroxyurea, a medicine that reduces the number of pain episodes.
Patients often also need to see primary care doctors for other problems, such as diabetes or high blood pressure. But those physicians don't know enough about sickle cell disease to treat the patients with the complex condition in mind, Claster said.
"This is a genetic disorder, and the primary care provider will ask them 'How long have you had this disease?'" she said.
So the new clinic, which expects to treat 300 patients, is experimenting with patients seeing both a hematologist and a primary care doctor during each visit.
Jones, who lives in Culver City, said he thinks that could alleviate problems he's faced in the past: "My hematologist will want me on one medication, and my primary care will change and will want me on a different medication, without even talking to each other," he said.
Patients at the clinic have access to exercise classes, as well as behavioral therapists who can help with mental health issues associated with the disease, including anxiety and depression.
The clinic is also staffed by peer navigators who call patients after visits to make sure they understood the doctors' advice and that they have transportation to their next appointment.
Physicians often overlook these sort of non-medical issues that can stand in the way of people staying healthy, experts say.
For instance, vaccinations are extra important for those with sickle cell disease because they're more vulnerable to infections.
But when a patient typically meets with a hematologist, "who's paying attention to that?" said Dr. Ellen Rothman, chief medical officer of the MLK outpatient center. Many patients end up neglecting immunizations that could be life-saving, she said.
The clinic's staff will try to stay on top of such preventative measures, searching through medical records to identify patients who haven't been vaccinated in the last 12 months and ensure they get their shots, she said.
Mary Brown, president of the Sickle Cell Disease Foundation of California — which provided some of the funding for the new clinic — said that after the sickle cell clinic at the old King/Drew hospital closed, many patients were left with nowhere to go.
"There are a lot of people who continue to fall through the cracks," she said.
Even with the right medicines and treatments, Jones said he's in pain every day. He's hoping that yoga classes at the new clinic will help provide long-term pain relief.
He said that after a crisis episode, it takes one to two weeks to feel normal again and regain muscle mass.
"We have to come from fighting for our lives ... to going right back into our environments and our own lives, and what's hard is they don't have anything in place to build you back up," Jones said. "MLK is talking about putting things in place to allow us to get back to our regular way of life."