When Damon first noticed swelling in his toes in March 2022, he figured it was nothing—maybe just fatigue from a long day. But by the next morning, the swelling had moved up his legs, and his body felt off in a way he couldn’t ignore.
He scheduled a visit with his primary care doctor, who ran some basic bloodwork. “She thought it might just be inflammation,” Damon tells BlackDoctor.org. “But a few days later, I got a call telling me to go straight to the ER.”
What followed was a medical rollercoaster. CT scans revealed tumors throughout his midsection—on his kidneys, liver, pancreas, and even his stomach.
“They told me they believed I had metastatic cancer… My heart dropped. That was very scary. And from there, the hospital went into emergency surgery the next morning. They did one of the least invasive procedures first, so they did biopsies on the stomach area,” Damon adds.
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But it wasn’t cancer. After months of fear, misdiagnosis, hospitalizations, and invasive tests, Damon finally got a diagnosis: Immunoglobulin G4-related disease or IgG4-RD—a rare, chronic immune-mediated inflammatory disease that often mimics cancer and confuses even experienced physicians. “I was excited to hear that I did not have cancer. And then I was even more relieved because they finally figured out what it was. So for a brief moment, I felt some relief—they found out what was wrong, especially after everything I had gone through over the last five or six months,” Damon shares.
Despite the relief, Damon couldn’t shake the fear of what might come next. “I had never heard of IgG4-RD, so when they told me, my heart kind of sank a bit—because my mother had multiple sclerosis, and she died from complications related to it,” Damon shares.
“Her sister had lupus, and she also died from complications related to her autoimmune disorder. So, I honestly got scared again, because I had seen their journeys and what they went through. But then I had to kind of pull myself together and say, ‘Okay, this is not going to be your journey. You’re going to do what you need to do and work with your care team to make sure you’re successful in managing this disorder—this disease.’”
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“We Still Don’t Know Enough”
Dr. Arezou Khosroshahi, a leading rheumatologist and professor at Emory University School of Medicine, was one of the first doctors in the U.S. to specialize in IgG4-RD and help define the disease in medical literature. She is also Damon’s treating physician, guiding his care since diagnosis.
“IgG4-RD is a chronic inflammatory condition where the immune system attacks healthy tissue,” Dr. Khosroshahi explains.
“It can affect virtually any organ—commonly the pancreas, kidneys, bile ducts, lungs, and lymph nodes. And it often gets mistaken for cancer because it forms masses or causes organ swelling.” She adds that diagnosis is rarely straightforward. “There’s no single test that says, ‘Yes, this is IgG4-RD.’ Diagnosis relies on a combination of symptoms, imaging, blood tests showing elevated IgG4 levels, and—crucially—a tissue biopsy.”
In Damon’s case, it took multiple biopsies and specialists to rule out cancer and arrive at the correct diagnosis. “I could hardly fit in pants or even shoes. It became scary because no one could tell me what was going on. They kept doing procedures—like a biopsy here, blood work there,” Damon recalls.
By the time of his diagnosis, his kidneys were inflamed, and his liver was at risk. The disease was affecting his entire body. “It was exhausting—and scary—just the unknown. Not knowing what was happening with your body. I did my best to remain positive. I had a great care team as well, but it was just the unknown, which was very scary at times. And it became exhausting because you’re going to doctor visit after doctor visit after doctor visit. And they’re all trying, doing their jobs—rightfully so—but it can really wear on you after a while,” Damon adds.
Dr. Khosroshahi says this delay is common. She notes the disease is more common in older men but can affect women and children as well, so it should be considered in all patients regardless of gender or age.
“Men are statistically less likely to seek early medical attention,” she explains. “But with diseases like this, timing is everything. The longer the inflammation continues unchecked, the more damage it can do.”
Why IgG4-RD Is Often Misdiagnosed
Because IgG4-RD is so rare and relatively new to the medical world—it was only fully recognized in the past 15 years—many physicians have never encountered a case before.
“We’re still learning about this disease, but awareness has improved greatly in specialties like rheumatology, pathology, and radiology. However, many other specialties still may not recognize it,” Dr. Khosroshahi explains. “What we do know is that it can look like cancer, or other autoimmune disorders like lupus or sarcoidosis. So many patients go undiagnosed or misdiagnosed for months, even years.” She stresses the importance of specialists working together. “This is a disease where coordination between rheumatologists, oncologists, radiologists, and pathologists is vital. You need a care team that communicates and knows what to look for,” she adds.
Treatment for IgG4-RD typically includes:
- Immunosuppressants, like corticosteroids or rituximab
- Regular monitoring with imaging and labs
- Long-term management to prevent relapses
The FDA recently approved UPLIZNA (inebilizumab-cdon), the first and only treatment for IgG4-RD, providing a way to reduce the risk of flares and long-term steroid use.
Living With a Rare Disease
Damon now receives regular monitoring and treatment that suppresses his overactive immune system.
“Thankfully, things are more stable now than they were a couple of years ago…There were some challenges—at first, my doctors didn’t know what the disease was. But they were determined to figure it out, learn about it, and help treat me. It’s been a journey over the last three years, but after receiving treatment and being under the consistent care of my physician, things have improved,” he explains.
He still has to get bloodwork every few months and remains vigilant about new symptoms. “I don’t have to see the doctor every month anymore—I go every three to four months—but during that time, I still get nervous,” Damon shares. “I worry when I get my blood drawn and wait for results. I keep thinking, ‘Has anything changed since my last visit?’” Despite the understandable anxiety of waiting for test results, Damon feels grateful to now be in remission. “Staying positive is very important,” he notes.
What Patients Should Know
According to Dr. Khosroshahi, anyone experiencing unexplained symptoms—especially swelling, organ pain or signs that resemble cancer—should not hesitate to seek answers.
“Listen to your body,” she says. “If your symptoms persist or escalate, don’t wait. Ask for referrals. Push for answers. And if you’re not getting them, find a second opinion.”
She also encourages patients to educate themselves. “There are now more resources than ever for patients with IgG4-RD. Advocacy groups like the IgG4ward! The Foundation is helping connect people to knowledgeable doctors and support communities. No one has to go through this alone anymore.”
Damon shares that same feeling. “I want to let others know they’re not alone. It is scary, especially in the beginning. But over the last couple of years, since my diagnosis, the advancements and resources available for patients with IgG4-RD have improved almost a hundredfold. There are organizations that provide information about your disease, support groups, help finding physicians, and education about how this rare disease impacts your body, because it affects everyone differently,” Damon notes.
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Damon’s Message: Speak Up. Don’t Wait.
Drawing strength from his faith during the darkest times, Damon now shares his journey to educate and uplift others. His biggest lesson? Don’t downplay your symptoms.
“It’s very important—especially for men—not to overlook or ignore when something feels off in your body. I think back on my own situation: if I had waited or brushed it off, thinking it was nothing, things could’ve gotten a lot worse. I might not be where I am today.”
“My care team saved my life,” he adds. “But I had to fight to get to them. That’s what I want other men to know. You are your own best advocate.”
He also encourages being open and honest with your care team.
“I’ve also learned that with this disorder, something that may seem small could actually have a big impact or meaning related to the disease. So being open, sharing everything, and asking questions is key, especially with a disease as rare as this. You have to learn as much as you can and learn how to live with it,” he concludes.
Resources and Support
IgG4ward! Foundation and IgG4-RD Out Loud – Patient support, testimonials, educational resources, doctor directories
- National Organization for Rare Disorders (NORD) – rarediseases.org
- Ask your doctor for an IgG subclass test or referral to a rheumatologist if symptoms persist
