Stephanie Morales was living with the autoimmune disease, lupus, for five years without symptoms. One day she noticed rashes forming all over her body - her primary care doctor was stumped.
"My hair began to fall out because I developed large ulcers in my scalp that was very painful as well. I was referred to many doctors. My PCP kind of thought it was an allergy," Morales recalled.
For a year and a half Morales fought the painful symptoms, visiting a number of specialists, eventually she found Dr. Jill Buyon, NYU Langone's Director of Rheumatology, who made the connection between her rashes and joint pain and lupus.
Buyon says it's often misdiagnosed.
"One of the aspects of lupus that troubles most patients and physicians is that it's not thought about often enough and if you don't think about it, you won't look for it," Buyon said.
In a project funded by the CDC, Buyon and her colleague, Rheumatologist Peter Izmirly, worked with researchers at the New York City Health Department - the team found that lupus prevalence among Hispanics and Asians was higher than known.
For women of child-bearing age, African-Americans still have the highest burden with one in 300 diagnosed with lupus, for Hispanics it's one in 600, Asians it's one in 900, compared with one in 1,600 for white women.
"That's not a rare disease, that is really astounding," Buyon noted.
"I think the front line people, emergency rooms, primary care physicians, should think lupus when they have unexplained kidney disease or joint pains or rashes and patients presenting to them with those symptoms," Izmirly said.
Morales hopes the new data will bring more awareness to lupus and its symptoms.
"I get very angry because so many things in my life could have been avoided," Morales said.
But says still, she's grateful to now be symptom free.
"There was a point in my life where my life didn't belong to me, it was just, it belonged to this disease and I couldn't control it and now I finally feel like I am in control again," Morales said.