Living with Autoimmune Pancreatitis
Theresa's IgG4-Related Disease Story
Theresa lives with Type 1 Autoimmune Pancreatitis, part of the IgG4-related disease (IgG4-RD) family — a rare autoimmune condition often mistaken for pancreatic cancer. In this video, she shares her journey, what a newly FDA-approved treatment for IgG4-RD means for patients, and how she can better advocate for herself with her healthcare team.
In this conversation, Theresa shares what it took to get the right diagnosis, how she learned to show up to every appointment as a full member of her own care team, and what it’s like to live with a disease that can turn on her within hours with little warning. She’s candid about the grief of giving up small pleasures, the mental load of self-monitoring, and what it meant to finally learn, five years in, that there was a newly recognized medical terminology or name for the disease, an ICD code, a community, and now an FDA-approved treatment for what she has.
Theresa found her diagnosis clarity and her community through a Mission: Cure webinar on autoimmune pancreatitis. Watch the webinar here, and read more about the new IgG4-related disease treatment approval here.
If Theresa’s journey resonates with you, you’re not alone; there’s a community ready to walk alongside you.
Frequently Asked Questions
What is type 1 autoimmune pancreatitis?
Type 1 autoimmune pancreatitis is a rare form of pancreatitis caused by the immune system attacking the pancreas. It’s part of a broader condition called IgG4-related disease (IgG4-RD), which can affect multiple organs beyond the pancreas.
Are there other types of autoimmune pancreatitis?
Yes. Autoimmune pancreatitis has three recognized subtypes. Type 1, the subtype Teresa lives with, is also known as IgG4-related disorder and is part of the broader IgG4-related disease family, which can involve multiple organs beyond the pancreas. Type 2, also known as Idiopathic Duct Centric Chronic Pancreatitis (IDCP), is typically limited to the pancreas alone and is not associated with IgG4-related disease. Type 3 is a newer classification linked to immune-checkpoint inhibitor pancreatic injury (ICI-Pancreatic Injury), a side effect that can occur in patients receiving certain cancer immunotherapies. Learn more about the different types of autoimmune pancreatitis.
Is autoimmune pancreatitis often misdiagnosed?
Yes. Because its symptoms — jaundice, elevated liver enzymes, pancreatic swelling — closely resemble pancreatic cancer, patients are frequently evaluated for cancer before an autoimmune pancreatitis, or IgG4-RD diagnosis is confirmed.
Is there an FDA-approved treatment for IgG4-related disease?
Yes, an FDA-approved treatment for IgG4-related disease is now available — a significant development for a condition that only received its own medical diagnostic code in 2024. Read more in [the treatment approval announcement].
Learn More About Autoimmune Pancreatitis
If you’d like to hear more from Dr. Hernandez-Barco, we encourage you to watch the full webinar, including the live Q&A session where she answered additional questions in real time.
Other Autoimmune Pancreatitis Resources
Keep Learning
Mission: Cure offers a growing library of free webinars, short form videos, blog posts, and tools to help people living with chronic or recurrent pancreatitis manage symptoms, reduce pain, and improve quality of life.
Check out our other resources featuring experts in pain management, nutrition, mental health, and more!
About Mission: Cure
At Mission: Cure, we are dedicated to finding effective treatments and, ultimately, a cure for pancreatitis. Through patient education, research, and advocacy, we strive to improve the lives of those affected by this condition.
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