Background/Purpose: In 1994, at 24 years old, I felt a sudden, sharp pain in my right ankle while crossing campus. My father shared that both he and my grandfather lived with gout and urged me to see a physician. But my concern was dismissed with: “You’re too young for gout.”

This began a 16-year journey through pain, misdiagnosis, and dismissal. Flares would vanish before appointments. Without visible signs, I was told it was overuse or that I was too active. I used crutches, then a wheelchair. I was prescribed nonsteroidal antiinflammatory drugs (NSAIDs) and steroids, but no one searched for the cause. By the time I was properly tested, I had lost 20% of my kidney function, and my serum uric acid (UA) level was over 10 mg/dL—far exceeding the 6.8 mg/dL threshold for gout diagnosis.

Each time I left a medical appointment without answers, I felt more invisible. Over time, I started questioning if anyone would ever believe the pain I was living through.

Intervention: In 2010, I finally saw a rheumatologist. For the first time, a physician listened. A simple blood test confirmed chronic gout.

That diagnosis wasn’t the end of my story—it was the beginning. For the first time, I felt validated—my pain had a name, and with that came hope for healing.

I started UA-lowering therapy, but after years of unmanaged disease, my levels remained high. I joined a clinical trial for an intravenous UA-lowering therapy. The treatments were grueling—six-hour infusions every two weeks for nine months. The first three months were the hardest as my body expelled years of UA crystals. With support from my medical team and family, I endured. By the end, my UA stabilized, my mobility returned, and I have not had a gout attack since.

Maintenance: Today, medication keeps my UA below 6 mg/dL. I exercise regularly, stay active, and enjoy foods I once avoided.

My 16-year struggle was isolating. I battled pain and mental health challenges brought on by dismissal and stigma. In 2015, after reclaiming my life, I helped establish a patient support group. What began as a small effort now reaches over 16,000 people, offering education, resources, and support to help others advocate for their health.

Through this community, we’ve connected patients with trusted specialists and empowered them to speak up, ask better questions, and demand the care they deserve.

Quality of Life: I am living fully and without limitations. I can travel freely, stay active, and enjoy everyday moments without fear of flares. I no longer schedule my life around my disease. Instead, I plan my future with confidence, knowing that gout no longer controls me.

Emotionally, I found freedom through advocacy. Helping others has restored hope and brought new purpose. For people living with gout, this quality of life means everything: living without pain, without fear, and with the confidence to fully participate in life.

Takeaway: Listen first. Create space for patients to fully share their experiences. Simple diagnostic tests, such as serum uric acid (UA) measurement, can prevent years of unnecessary suffering.

Recognize the mental health impact. Include mental health check-ins for patients with chronic disease. Acknowledging emotional well-being improves outcomes and strengthens trust.

Address stigma head-on. Educate patients and care teams that gout is a complex, chronic disease requiring proactive, long-term management. Correcting misinformation can be the first step toward treatment adherence.

Partner with patients. Use shared decision-making to set treatment goals, establish UA targets, and provide regular follow-up support. Patients who feel heard are more engaged and committed to their care.”

« Back to ACR Convergence 2025

ACR Meeting Abstracts - https://acrabstracts.org/abstract/from-invisibility-to-advocacy-a-gout-patients-journey-to-validation-and-systemic-change/