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Doctors Thought This Mother Had Everything From Ringworm to Leukemia. After 19 Years She Was Finally Diagnosed with Lupus

"I always knew something was wrong with me," says Nyobie Gordon-Ricks, a mom of two

By Wendy Grossman Kantor  Published on April 15, 2026 09:15AM EDT

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Doctors Thought it was Ringworm or Leukemia: After 19 Years She Was Diagnosed with Lupus

Nyobie Gordon-Ricks.

Credit : courtesy of Nyobie Gordon-Ricks

Nyobie Gordon-Ricks spent 19 years having her symptoms dismissed or misdiagnosed with everything from ringworm to leukemia before she was diagnosed with lupus in 2010.

“For years, I went to doctors and nobody listened to me,” says Nyobie Gordon-Ricks, 48 of Gilbert, Arizona, who works as a pharmacy technician.  “I felt like no one understood and no one believed that there was really something wrong with me.”  

Her long path to diagnosis isn’t unusual, says Dr. George Tsokos, a member of the Lupus Foundation of America Medical-Scientific Advisory Council, who has spent years educating healthcare professionals about the symptoms and signs of lupus, an autoimmune disease which attacks the body's own tissue. Because lupus can present in many different ways, symptoms can range from headaches and fatigue to joint paint to hair loss to seizures, which means that no two people might experience it the same way — and thus it can often be overlooked as a diagnosis.

“A big problem is, even in great medical centers, sometimes it takes a lot of time to diagnose,” says Tsokos, who is also chief of rheumatology and clinical immunology at Beth Israel Deconess Medical Center and professor at Harvard Medical School. “If there are symptoms that are not explained, insist on getting more expert opinions and find people who can treat early and treat aggressively.”

Now an ambassador for the Lupus Foundation of America, Gordon-Ricks shares her story urging others to advocate for themselves and to know they are not alone as they battle lupus, a misunderstood and often invisible illness.

“I want people to know that you have to look beyond what's visible. This disease is a disease that nobody can see,” she says.

Gordon-Ricks says her symptoms started when she was 13. Her knees and ankles were swollen, her back hurt and she had a rash on her face.

Her mother took her to a doctor who dismissed it as hormonal changes from puberty.

A year later, she started having episodes of partial paralysis. “I would go numb from my waist down,” she recalls. “I told my mom and she thought I was being lazy and I didn't want to go to school. I would literally lay on our living room floor for hours, waiting for the feeling to come back.”

The second time the paralysis happened, her mother called an ambulance. At the hospital, she was categorized as having a “mental episode,” she says. She was hospitalized for two days, then released: “After that I was like, “I'm just not going to tell anybody anything anymore because nobody's believing me."

She experienced partial paralysis throughout high school, she says, and would wait out the episodes with a heating pad and pain medications.

“There were days where I felt well, and then there were days where I wasn't,” she says. “I didn't know what was going on with me."

In 2009, she got a rash on her back, arms and legs; the first dermatologist she saw said she had ringworm. The second doctor thought it didn’t look like ringworm, but didn't have a better suggestion. Steroid cream helped and the rash went away, but Gordon-Ricks wanted to know what was wrong. She was, 32, engaged and planning her wedding.

In May 2010, she told her gynecologist about her symptoms; bloodwork showed her platelets and red and white blood cells were all low. She saw a series of doctors who thought she might have leukemia, multiple sclerosis or rheumatoid arthritis. The sixth specialist she visited asked if anyone in her family had lupus. She said no.

On December 11, 2010, she learned she tested positive for lupus. It was five days before her 33rd birthday.

“I'm feeling a little bit of relief because now I know what's wrong with me, but now I'm scared because I don't know what this means for me,” she says.

Her fiancé told her she would be fine. His aunt had lupus, and she always seemed fine, he said.

“I said, ‘From what I understand, a person can look fine but still be sick. Right now, I know physically I look good. But I feel like crap. Everything is sore. Everything hurts. When I move, it hurts,’ ” she recalls.

The unpredictability also meant she needed help caring for her then-3-year-old daughter and 8-year-old son.

“I went from wrestling with my kids to it hurting just for one of them to hug me,” she says. “I was in bed for days because the furthest I could go was from my bedroom to my bathroom. I couldn't comb my hair. I could barely brush my teeth. It was a hard adjustment because you're looking at somebody who on the outside looks healthy, but the inside their body is falling apart.”

She took her mother or her fiancé with her when she went to the doctor, because she had trouble remembering what the doctor told her.

“I was really spacey,” she says. “I could be in the middle of a conversation and I'll just stop talking because I lose train of thought.”

Plus she was having terrible headaches. “It felt like I can feel a heartbeat in my skull, all like the thump. I don't know what's going on,” she says.

https://people.com/lupus-diagnosis-after-years-of-misdiagnosis-exclusive-11919604

Her doctor ordered a full body scan. “He said, ‘You have inflammation from your brain to your toes. There is some type of swelling in every single part of your body,' " she recalls. The diagnosis: Lupus cerebritis, which affects the brain.

“I was scared for my life,” she recalls: “Can I die from this? Is this something that's fatal? How treatable is it?”

In March 2012, she started 12 rounds of monthly chemotherapy, which was effective.

And when she returned to the gynecologist who first took her symptoms seriously, Gordon-Ricks was emotional. "I told her, 'You literally saved my life. It's in my kidneys, it’s attacking my joints, and it's in my brain.’ She just hugged me and I cried like a baby. I was like, 'I don't think that I would be here if you didn't listen to me.' "

When Gordon-Ricks finished chemo, she and her fiancé moved to Arizona and got married in March 2014. “He’s been a big support. He goes to the doctor with me. He asks questions that I may not ask. He recognizes when I'm not feeling well, even when I pretend that I'm okay. He's even helped me facilitate lupus support groups. He was able to step in and help me the way that I needed help,” she says.

Her lupus nephritis went into remission in 2017.  Because the lupus attacked her ovaries, cervix, and fallopian tubes, she had a full hysterectomy in September 2018.

Today, her lupus is still active, but is controlled by medication. She actively volunteers with the Lupus Foundation as an ambassador, speaking at health fairs and spreading awareness. She shares her story in hopes it will help other people get diagnosed more quickly than she did. She runs her own lupus awareness website, the Arizona Butterfly Warriors, and is active on social media.

“The biggest advice I can give is: Never give up. Learn how to be an advocate for yourself. Learn how to ask for a second opinion. Never take no for an answer. If you feel like you're not being heard, if you feel like your doctor isn't listening, find a new doctor,” she says. “If you know in your heart something's wrong with you, you need to keep going until you get the answers that you deserve. There is hope: There are people that are willing to listen. You just have to find them.”

A lupus diagnosis, she says, is not a death sentence.

“We can survive this,” she says.

https://people.com/lupus-diagnosis-after-years-of-misdiagnosis-exclusive-11919604