For men with Lupus, getting a diagnosis can take time

SMYRNA, Ga. (FOX 5 Atlanta) - Levi Holcomb's symptoms began early.

Back in elementary school, the Smyrna, Georgia 22-year old starting experiencing migraines, sometimes 4 or 5 times a week.

By 15, Holcomb had developed a pink rash on his face.

"People would think I got beat up or something," Holcomb says. "What happened? I didn't even know what happened."

And, there were other symptoms: unexplained fatigue, joint pain, and kidney issues.

"It went from me being a perfect attendance student to me missing 6 or 7 days every quarter," he says.  "It was messing up with my track and field.  I was doing orchestra, couldn't practice."

At 17, a trip to Grady Hospital in Atlanta, helped him get some answers.

He was diagnosed with discoid lupus, a chronic autoimmune disorder that typically affects the skin, triggering that telltale rash.

But it would take Holcomb 5 more years for doctors to diagnose him with systemic lupus, or SLE, which can affect his whole body.

One reason for the delay?

Levi Holcomb is an outlier.

The Lupus Foundation estimates that 1.5 million Americans have lupus, and 90% are female.

"The typical lupus patient is going to be a young female," Dr. Michael Smitherman, a rheumatologist at the Atlanta Arthritis Center, says.  "That's who it going to present in, most of the time, but not always. It can happen at any point in your life, children can get lupus, older adults can get lupus."

Dr. Michael Smitherman says lupus is also much more common in younger women of color, especially African American women.

Diagnosing Lupus, he says, is like trying to put together the different pieces of a puzzle.

"Sometimes, it's perfectly clear, the labs are all positive, and the patient has the right symptoms," Smitherman says. "But, other times, it may happen over time.  Someone might have a rash this year, and come in next year with oral ulcers, or have some kidney problem.  Eventually, it all comes together with a diagnosis."

Holcomb says it took him about 5 years to understand his illness, but he is not frustrated.

"This is still an early diagnosis," he says. "I could have been diagnosed years from now when it was too late. Now, it seems like it is early enough, thanks to the Lupus Foundation, for linking me up with a doctor that would help out."

Because Holcomb didn't have health insurance, the Lupus Foundation also gave him financial assistance to help pay his medical bills, and helped him find health insurance plan he can afford.

He has been vigilant about taking his medication, and going to see his rheumatologist, and Holcomb hasn't had a flare-up in months.

"He's so far been very lucky," Dr. Smitherman says.  "So, it's really important to stay on his medications and continue to make sure there are not manifestations."

Levi Holcomb knows has a long road ahead of him.

But, he says, he's grateful, he's not fighting Lupus alone.

If you are in need of a support group, the Lupus Foundation can link you to support groups just for males.