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

**Lupus Warrior: Nyobie Gordon-Ricks Shares Her Journey to Diagnosis, Advocacy and Hope**

Nyobie Gordon-Ricks, a 48-year-old mother of two from Gilbert, Arizona, endured nearly two decades of misdiagnoses and dismissed symptoms before finally being diagnosed with lupus in 2010. Her experience sheds light on the struggles faced by those with autoimmune diseases, particularly lupus, which often eludes detection due to its varied symptoms.

“For years, I went to doctors and nobody listened to me,” Gordon-Ricks recalls, expressing her frustration at being misunderstood. As a pharmacy technician, she had a front-row seat to the medical world, yet her symptoms led to a range of inaccurate diagnoses from ringworm to more serious conditions like leukemia. This sense of isolation and disbelief from medical professionals left her feeling as though no one understood the reality of her condition.

Dr. George Tsokos, who sits on the Medical-Scientific Advisory Council of the Lupus Foundation of America, explains that Gordon-Ricks’ experience is not uncommon. The highly variable presentation of lupus symptoms—ranging from fatigue and headaches to joint pain and hair loss—often results in misdiagnosis. “A significant challenge is that, even in well-regarded medical centres, diagnosis can take time,” notes Dr. Tsokos, emphasising the need for patients to seek multiple opinions when faced with unexplained symptoms.

Gordon-Ricks’ journey began at the tender age of 13, when she experienced painful swelling in her knees and ankles, accompanied by back pain and facial rashes. Unfortunately, her mother and initial doctors attributed these symptoms to adolescent hormonal changes. A year later, episodes of partial paralysis further complicated her situation, but even that was dismissed as “laziness.” It wasn’t until after a severe episode, which prompted an ambulance visit, that she felt compelled to stop sharing her struggles, given the dismissive responses.

Throughout her high school years, she grappled with the unpredictability of her condition. “There were days where I felt well, and then there were days where I wasn’t,” she states, illustrating the duality of a life marked by chronic pain and constant fatigue. It wasn’t until 2009 that her quest for answers intensified when she developed a rash that led her through a series of dermatological consultations.

In 2010, after persistently pushing for answers, Gordon-Ricks finally saw her bloodwork indicating low platelet counts and low levels of red and white blood cells. Various specialists suggested serious conditions, including multiple sclerosis and rheumatoid arthritis, before a crucial conversation occurred regarding the possibility of lupus. Just five days before her 33rd birthday, she received her official lupus diagnosis.

While the diagnosis provided some relief, it was overshadowed by fear and uncertainty. “I felt 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 reflects. The unpredictable nature of lupus took a toll on her family life, particularly her ability to care for her children.

With physical limitations impacting her daily life, Gordon-Ricks described feeling isolated and fatigued, often resorting to pain medication and heating pads to manage her symptoms. Frequent doctor visits, cognitive difficulties, and severe headaches added to her frustrations as she navigated an invisible illness that left her feeling more alone than ever before.

Eventually, medical advancements allowed for better management of her condition. Following a chemotherapy regimen in 2012, which effectively treated her lupus cerebritis—an inflammation associated with her brain—she experienced significant improvements. Gordon-Ricks married her fiancé in 2014, who has been a steadfast support, attending medical appointments and encouraging her advocacy for lupus awareness.

Although successfully managing the disease today, Gordon-Ricks acknowledges her ongoing struggles with lupus and the associated challenges it presents, including a hysterectomy necessitated by the disease’s impact on her reproductive organs. Despite this ongoing battle, she has turned her experience into a platform for helping others.

As an ambassador for the Lupus Foundation of America, she shares her journey, advocates for early diagnosis, and encourages others to take an active role in their health care. Through her initiatives, including the Arizona Butterfly Warriors, she hopes to foster a community and increase awareness about lupus.

“Never give up. Learn how to be an advocate for yourself. Never take no for an answer,” she urges people experiencing similar health struggles. “If you know in your heart something’s wrong, keep going until you get the answers that you deserve. There is hope; there are individuals willing to listen—you just have to find them.”

For Gordon-Ricks, lupus is not a death sentence but a challenge that can be managed. Her journey continues to inspire both her family and others facing similar battles, reminding them that, even with an invisible illness, they are not alone in their fight.