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FROM MISDIAGNOSIS TO ANSWERS:
Damon’s Battle with IgG4-Related Disease, a Rare Chronic Illness

Amgen EIGI25 Blog

When Damon, a Detroit native now living in the Atlanta area, noticed swelling in his toes, he dismissed it. Within a day, the swelling spread, and he knew something was wrong. Trusting his instincts, he saw a doctor — a decision that changed his life.

Scans revealed growths in his kidneys, liver and stomach, and inflammation in his pancreas. At first, doctors feared cancer. After months of biopsies, Damon finally learned the truth: Immunoglobulin G4-related disease (IgG4-RD), a rare immune-mediated condition where the body attacks its own tissues, often without symptoms.1

IgG4-RD can impact many organs, including the digestive system — pancreas, stomach, bile ducts, and gallbladder. It may cause gastrointestinal issues like abdominal pain, jaundice, and weight loss.2 Because IgG4-RD mimics other illnesses, it’s often misdiagnosed, delaying care for patients.3

For Damon, the diagnosis changed everything. “Before my symptoms, I was very active — working in the office, traveling, going to church. During my diagnosis journey, I got winded standing in the shower or brushing my teeth, and couldn’t walk my dog,” he shares. Flare-ups are unpredictable. At one point, the disease spread to his heart causing inflammation without clear symptoms.

Today, Damon’s health is more stable. He works with his care team and shares his journey so others facing IgG4-RD aren’t overlooked. His advice: “Don’t ignore when something feels off. Speak up, ask questions, and push for answers.”

Learn more at www.IgG4RDOutLoud.com.

Damon is an actual patient with IgG4-RD and has been compensated by Amgen for his participation in this program.

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REFERENCES

  1. Perugino CA, Stone JH. IgG4-related disease: an update on pathophysiology and implications for clinical care. Nat Rev Rheumatol. 2020;16(12):702-714. doi:10.1038/s41584-020-0500-7
  2. Pinheiro FAG, Pereira IA, de Souza AWS, et al. IgG4-related disease—rare but you should not forget it. Adv Rheumatol. 2024;64(35). doi:10.1186/s42358-024-00374-y
  3. Goodchild G, Peters RJ, Cargill TN, et al. Experience from the first UK inter-regional specialist multidisciplinary meeting in the diagnosis and management of IgG4-related disease. Clin Med (Lond). 2020;20(3):e32-e39. doi:10.7861/clinmed.2019-0457

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