Dec 17, 2021
Eosinophilic Granulomatosis with Polyangiitis (EGPA), formerly known as Churg-Strauss Syndrome, is a rare condition that can be challenging to diagnose. In this episode, co-hosts Dawn McCoy and Ryan Piansky explore the topic of EGPA and how it can be managed with expert Peter A. Merkel, MD, MPH.
Dr. Merkel is the Chief of Rheumatology and a Professor of Medicine and Epidemiology at the University of Pennsylvania. Dr. Merkel is an internationally recognized research and clinical expert in vasculitis and scleroderma and is an author of over 350 scientific publications. He is the Principal Investigator of the NIH-Sponsored Vasculitis Clinical Research Consortium (VCRC), a leading international research infrastructure for vasculitis clinical investigation. Dr. Merkel’s research focuses on clinical trial design and conduct, outcome measure development, clinical epidemiology, genetic epidemiology, and biomarker discovery.
In this episode, Dr. Merkel shares information about what EGPA is, and why diagnosing it can be a challenge. A rare disease that mimics other conditions, EGPA is often misdiagnosed and confused with other similar conditions. Dr. Merkel explains the key identifying features of EGPA, current treatment options, and how patients can manage their symptoms by working closely with their healthcare team. He also talks about research advances in this area, and how patients can help in the understanding, treatment, and management of EGPA. Tune in to find out more.
Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.
Key Takeaways:
[1:31] Ryan introduces the guest for this episode — Dr. Peter Merkel.
[2:15] Dr. Merkel shares a little about his background and his experiences treating people with EGPA.
[3:42] EGPA can be difficult to diagnose because the symptoms are similar to other diseases. What are some common conditions that EGPA is misdiagnosed as?
[7:30] How well is EGPA understood among doctors?
[9:11] There is a lot of overlap between EGPA and other conditions. What makes EGPA unique?
[10:11] How likely are doctors to come across a situation where it is impossible to distinguish between EGPA and other conditions?
[11:39] What are some indications or symptoms that would prompt a doctor to start exploring EPGA as a diagnosis? Specifically, how do doctors make that diagnosis?
[13:01] How would doctors determine if a person’s asthma is related to EGPA or eosinophilic asthma? Can a person have both conditions?
[14:23] Do most people with EGPA end up seeing a number of different specialists before they get to diagnosis?
[15:50] Who are some of the specialists that a person with EGPA might want to have on their care team?
[17:14] With so many different things to juggle at once, how often should patients see their care team?
[19:24] What kinds of research is being conducted to develop a proper diagnostic test for EGPA?
[20:54] Dr. Merkel explains more about the different treatment options available and how they work.
[25:54] The other aspect of treating EGPA is addressing the airway disease.
[27:05] What is considered well-controlled EGPA?
[28:05] What is the typical progression of EGPA?
[29:00] EGPA is a fairly rare condition. Is it more common in children or adults?
[30:57] What are some key findings from recent research about EGPA?
[32:17] How has Dr. Merkel seen patients make a difference in research discoveries?
[33:26] Dr. Merkel shares a few resources for listeners.
Mentioned in This Episode:
American Partnership for Eosinophilic Disorders (APFED)
APFED on YouTube, Twitter, Facebook, Pinterest, Instagram
Dr. Peter Merkel at Penn Medicine
Real Talk: Eosinophilic Diseases “Episode 003: Self-Advocating With an Eosinophil-Disease”
Vasculitis Clinical Research Consortium (VCRC)
APFED Resource Page: Eosinophilic Granulomatosis With Polyangiitis
Eosinophilic Connect Patient Insights Network
EOS Connections Online Community
This episode is brought to you thanks to the support of our Education Partner: GlaxoSmithKline.
Tweetables:
“EGPA is a form of vasculitis but really, it’s a combination of multiple different organ system problems. The commonality among patients who have EGPA is over 90% of patients will have asthma.” — Dr. Merkel
“[EGPA] is a rare disease. It’s unusual and it can mimic other things and it hides in plain sight.” — Dr. Merkel
“The patient needs to be part of that captaincy, if you will, and he or she should help take control of their own disease. I think that’s very important for patients to be as aware as they can so they can help work together.” — Dr. Merkel
“You can’t do research without patients. They’re at the center of what we do.” — Dr. Merkel