Apr 25, 2023
Description:
Co-hosts Ryan Piansky, a graduate student and patient
advocate living with eosinophilic esophagitis (EoE) and
eosinophilic asthma, and Holly Knotowicz, a speech-language
pathologist and feeding specialist living with EoE who serves on
APFED’s Health Sciences Advisory Council talk with guest Ashley
Spencer, patient advocate, a young adult from Bristol, PA, living
with Eosinophilic Granulomatosis with Polyangiitis (EGPA).
In this episode, Ryan and Holly discuss with Ashley her history
with EGPA, how she was diagnosed, and some things you can do to
advocate for yourself and others if you are living with EGPA. She
explains the chronic nature of the disease and the treatments that
help her in the day-to-day management of EGPA.
You will appreciate Ashley’s positive attitude and determination to improve the outcomes of people living with EGPA.
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:
[0:50] Ryan welcomes co-host Holly Knotowicz. Holly introduces the topic: Eosinophilic Granulomatosis with Polyangiitis (EGPA) Today’s episode features the perspective of a patient living with EGPA.
[1:52] Holly introduces Ashley Spencer, a young adult from Bristol, Pennsylvania, living with EGPA.
[2:03] Ashley thanks Holly and Ryan for having her on the podcast.
[2:19] Ashley says it is not a walk in the park living with EGPA. When Ashley was 16, she started displaying symptoms of EGPA. At the time, because of her age, doctors didn’t associate her symptoms with anything other than severe asthma.
[2:45] Two years later Ashley developed sinus issues that required surgery. Every year she displayed more symptoms.
[3:03] Ashley says EGPA has three stages and early diagnosis can halt its progress.
[3:36] EGPA stands for Eosinophilic Granulomatosis with Polyangiitis. Eosinophils in the body are high, causing inflammation within the body including major organs.
[4:01] Ashley had exercise-induced asthma. She played sports and danced, but all of a sudden, it went from exercise-induced asthma to severe asthma. She was admitted to the hospital for it and needed continuous albuterol treatments. From age 16 until now, Ashley has not been able to get off steroids, which can cause severe issues.
[5:05] Ashley displayed sinusitis issues when she was 18. Within two years, she had four sinus surgeries in all eight of her sinus cavities for sinusitis and nasal polyps.
[5:26] The polyps were starting to show eosinophilia but not enough for a full diagnosis. Because Ashley was moving from adolescence to adulthood, she had to be transitioned from doctors at Children’s Hospital Philadelphia to an adult doctor. Her family doctor told her she was getting worse. He sent her to National Jewish in Denver, Colorado.
[6:12] Ashley checked into National Jewish Health for two weeks. Every day she saw doctors and had testing. Ashley was diagnosed with Churg-Strauss Syndrome, which is now known as Eosinophilic Granulomatosis with Polyangiitis (EGPA).
[7:28] By the time Ashley got the diagnosis, she was in the last stage of EGPA, which is the vasculitic stage.
[8:09] A common misconception about EGPA is that it doesn’t affect children and young adults. Another misconception is that EGPA patients may visually look healthy, similar to many autoimmune disease patients. EGPA affects the internal body.
[9:18] Ashley’s lungs, sinuses, and her nervous system have been impacted. One morning she woke up and she was paralyzed from the waist down. This shut down her bladder function and she developed mononeuritis multiplex which caused severe peripheral neuropathy from her knees down.
[9:48] Ashley was hospitalized for three weeks and then went to a rehab to relearn how to walk. Ashley worked with her urologist to get a medical device to signal when she needs to use the bathroom.
[10:33] Ashley also has heart issues but if she stays on her daily maintenance medications, she does well.
[11:09] Ashley talks about specialists she sees: a pulmonary doctor, an ear, nose, and throat specialist, a women’s healthcare team for bone health, a urologist, a neurologist, and an allergist and immunologist.
[12:18] A good day for Ashley would be if she got out of bed, took a shower, and went to school. A bad day would be not being able to get out of bed and just staying in bed all day and sleeping.
[13:17] Ashley and Holly discuss the “spoon theory.” You start the day with 10 spoons and each activity takes away one or more spoons. When your spoons are gone, you are done for the day. You don’t have more to give.
[16:45] How you can help a friend with EGPA: Join a Facebook group for EGPA. Ashley shares a personal story of an online friend who became an in-life friend. She encourages listeners to explore Facebook groups related to eosinophilic diseases.
[18:31] It’s hard for someonewith no experience with eosinophilic disorders to understand someone with EGPA.
[20:33] There are situations you can explain that help your friends not living with eosinophilic diseases to better understand you.
[21:41] Ashley has medication and a medical deviceto help her manage EGPA.
[22:47] Ashley shares how her care has changed over the last ten years. When she started at the Cleveland Clinic, she went on a biologic to improve lung function that changed her life. She was able to work out again. Her stamina increased. It also helped a little bit with her neuropathy.
[24:40] Ashley shares experiences with school and social activities with EGPA. She was in a college physical therapy program when her sinuses caused her to be admitted to the hospital. The doctors told her it was not feasible for her to continue to her senior year and she was heartbroken. She did not graduate or become a physical therapist.
[26:23] Ashley’s career now is advocacy. She often speaks to new EGPA patients about the disease and treatment options. She also talks to allergy patients. Years ago, Ashley made national news by going into anaphylactic shock on a plane when flying to the Cleveland Clinic and a Cleveland Clinic doctor on the plane saved her life.
[27:38] Ashley’s advice for traveling with EGPA is to wear medical identification jewelry.
[30:03] Ashley refers to those living with EGPA as vasculitis warriors. She always invites them to connect with others on social media and to reach out if they need help.
[30:58] Ryan shares the online resources to help with the day-to-day management of EGPA at apfed.org and apfed.org/connections.
[31:28] Ryan and Holly thank Ashley for sharing her experience. Holly and Ryan thank APFED’s education partners, as well, linked below.
Mentioned in This Episode:
American Partnership for Eosinophilic Disorders (APFED)
APFED on YouTube, Twitter, Facebook, Pinterest, Instagram
Children's Hospital of Philadelphia
Eosinophilic Disease Group on Facebook
Real Talk: Eosinophilic Diseases Podcast
This episode of APFED’s podcast is brought to you thanks to the support of AstraZeneca, Bristol Myers Squibb, GlaxoSmithKline, Mead Johnson Nutrition, Sanofi, and Regeneron.
Tweetables:
“To be real with you, it’s not a walk in the park living with EGPA, let alone being diagnosed with EGPA.” — Ashley
“When I was 16, I started displaying symptoms of EGPA. But at the time, because of my age, they didn’t associate it with anything other than just severe asthma. And then, two years later, I developed the sinus issue.” — Ashley
“By the time I got the diagnosis, I was in the last stage [of EGPA], which is the vasculitic stage. So it was very sad.” — Ashley
“It’s not really seen in youth patients and young adults.” —
Ashley