Podcasts about egpa

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 living with EoE who serves on APFED's Health Sciences Advisory Council, interview Jason Ingraham, an adult living with eosinophilic fasciitis (EF), and Dr. Catherine Sims, a rheumatologist at Duke University and a Health Services Research Fellow at the Durham Veterans' Affairs Hospital. They discuss Jason's experiences living with EF and Dr. Sims's experience treating EF. They share Jason's journey to diagnosis and the importance of working with a group of specialists. They share tips on medication and physical therapy, how to communicate with your medical team, and manage your activity and mindset. 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: [:50] Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron, and co-host, Holly Knotowicz.   [1:14] Holly introduces today's topic, eosinophilic fasciitis, with guests, Jason Ingraham and Dr. Catherine Sims.   [1:25] Jason is an adult living with eosinophilic fasciitis (EF). Dr. Sims is a rheumatologist at Duke University and a Health Services Research Fellow at the Durham Veterans' Affairs Hospital.   [1:52] Dr. Sims explains what EF is. Patients may present with symptoms of large plaques on their skin, edema of arms and legs, Raynaud's Phenomenon, contractures of arms or legs, limited mobility, or loss of the ability to do tasks they used to do.   [2:42] EF, as with most eosinophilic disorders, doesn't follow the textbook. Some people will present with one symptom and some with multiple symptoms. There is a disconnect between how we diagnose conditions like EF and how patients present.   [3:01] There are major and minor criteria for the diagnosis. As in Jason's case, it takes time for the symptoms to present. Things develop over time. It took multiple specialists to diagnose Jason.   [3:38] Eosinophilic conditions are incredibly different from each other. When Dr. Sims sees a patient with high eosinophils, she thinks of three major buckets: infection, autoimmune diseases, and cancer.   [4:12] Patients will often see many different specialists. In Jason's case, they had done a skin biopsy that wasn't as helpful as they hoped. That led him to get a deep muscle biopsy to collect the lining of the muscle.   [4:47] Fasciitis is the inflammation of the muscle lining or fascia. A sample of the fascia can demonstrate under the microscope if there is a thickening, swelling, or inflammation of the lining of the muscle.   [5:24] Dr. Sims as a rheumatologist treats a number of rare diseases. Eosinophilic fasciitis is an ultra-rare disease.    [5:43] Jason had a local primary care doctor and a rheumatologist who both did a really good job and referred him to Dr. Sims. She had the benefit of their hard work to guide her next steps. Because EF is so rare, she has pitched Jason's case twice in rheumatology grand rounds sessions.   [6:18] During one of these sessions, Dr. Sims was advised to get the fascial biopsy that ultimately led to the diagnosis. She benefited from the intelligence and input of dozens of doctors.   [6:59] In the Fall of 2022, while hiking on vacation with his wife, Jason was extremely fatigued, and his forearms and lower legs swelled. His socks left deep impressions. It was difficult to reach his feet to put socks on. He spent a lot of time uncharacteristically resting.   [8:09] Jason's primary care doctor ran lots of blood tests. He thought it might be a tick bite. Jason started seeing specialists, having tests and hospital visits.   [8:57] Jason worked with a rheumatologist in Wilmington, an infectious disease doctor, and a hematologist/oncologist who reached out to a Duke expert. He also saw a pulmonologist and a dermatologist. He got the referral to Dr. Sims for March of 2023.   [9:57] The first diagnosis Jason received was after his first hospital stay in January of 2023, when he had bone marrow biopsies, CT scans, ultrasound, and other tests. He was deemed to have idiopathic hypereosinophilic syndrome (IHES).   [10:30] It was only a few weeks before his local rheumatologist said his panels were back and one tipped it from an IHES diagnosis to eosinophilic granulomatosis with polyangiitis (EGPA). He joined the Vasculitis Foundation and researched EGPA.   [11:03] Dr. Sims told Jason that EGPA was a working diagnosis but he didn't check all the boxes. There was the underlying thought that maybe it was something else. He had a second flare when he came off of prednisone in June of 2023.   [11:48] Dr. Sims scheduled Jason for a muscle biopsy while he was off steroids. That's how he got the diagnosis of eosinophilic fasciitis (EF). Jason says the disorder is hard for him to pronounce and he can barely spell the words.   [12:52] Jason's wife Michelle encouraged Jason to track his symptoms and medications and keep track of data. Going from specialist to specialist, the first thing he did was give the history.   [13:31] Jason found it helpful to create a spreadsheet of data with blood test results, meds, how he was feeling each day, his weight, and even notes about when he had difficulty putting his socks on. Jason is an advocate of owning your continuity of care as you see different doctors.   [14:42] Jason says the doctors at Duke talk very well between themselves.   [14:49] Jason likes to look back at that spreadsheet and see how far he's come, looking at the dosage he was on during and after flares and the dosage he's on now, or zero, on some of the medications. That's a little bit of a victory.   [15:16] Holly works at a private hospital without Epic or CareEverywhere so she gives physical notes to her patients to give to their doctors. She comments that a great PCP, like the one Jason had, can make all the difference in the world.   [16:18] Jason's PCP, Dr. Cosgrove, referred Jason to Duke for a second opinion. That was where he met Dr. Sims. He's glad to have both Dr. Sims and his PCP accessible.   [17:35] Jason says the number of questions you have with this type of thing is immense. When you look up EF, you find very little and the literature isn't easily digestible by patients. Being able to reach out to your doctors for a quick question is super helpful. [17:56] Jason has been able to do telehealth follow-ups and not always have to travel or take off work, which has been extremely helpful. He has been at Duke a good handful of times for various things but remote follow-ups are helpful.   [18:52] Dr. Sims says people just don't know about EF as it is an ultra-rare diagnosis. Even physicians don't understand what causes it. It's lumped in with all other eosinophilic conditions but these disorders don't all present the same way.   [19:19] EoE doesn't look like EF, even though they're both driven by the same immune cells. Dr. Sims says the first need is educating providers and patients on what the diagnosis is; awareness in general when a patient is having this swelling of extremities.   [19:44] Dr. Sims says at his baseline, Jason is very active with multi-mile hikes. When Dr. Sims met him, he was off from the baseline of what he was able to do. Being aware of your baseline and changes from that is very informative for doctors.   [20:07] Dr. Sims talks about the patient being a liaison between multiple specialists. Bringing data to your subspecialist always helps facilitate care and come up with a bigger picture of what's happening.   [20:23] Jason first went to Dr. Sims with the diagnosis of EGPA. She said, let's treat the EGPA and see what happens but they kept an open mind. With ultra-rare diseases, sometimes it's difficult for patients not to have a label for their condition.   [20:45] Dr. Sims explains to her patients that sometimes we live in the discomfort of not having a label. She keeps an open mind and doesn't limit herself to just one diagnosis. She seeks feedback from providers who have seen this before and know what works.   [21:07] Just as Jason described, you will go through multiple diagnoses. Is this cancer? Is it a parasitic infection? Where did you travel? You will see many subspecialists. It's extremely anxiety-provoking.   [21:31] When Dr. Sims did her grand rounds, she gave a third of the presentation, and the other two thirds were presented by an infectious disease doctor and a hematologist. In these cases, you need more than one subspecialist to complete the workup.   [22:10] Dr. Sims says there are a lot of misconceptions that the patient will get the diagnosis right away and the right therapy and get better. There are multiple therapies, not just medications. There are lifestyle and work modifications; it's a gradual process.   [22:22] One of Dr. Sims's goals for Jason and Michelle is to get back to doing the things that they enjoy, tennis and hiking. That's a measurement of the quality of life that a patient has.   [22:34] Talking to your doctors about how you're feeling and how you're functioning is huge. It may be that this is your new normal, but it may also be that we can make adjustments to maximize your quality of life.   [23:00] There are misconceptions about the journey of diagnosis and treatment. Have a close relationship with your subspecialist. PCPs have a high burden of expectations. As a rheumatologist who treats rare diseases, it's helpful to take on a part of that burden.   [22:31] If you don't have good communication with your providers and they aren't listening to you, you can always go get another opinion. The provider relationship is life-long.   [23:43] It's important for your provider to take what's important to you into consideration when they make treatment decisions.   [25:00] As a rheumatologist, steroids are a first-line therapy for Dr. Sims. Their role is the quick control of inflammation. The goal is always to get you off of the steroids as soon as possible, in the safest way possible.   [25:17] When Jason came to Dr. Sims, he was on mepolizumab for the working diagnosis of EGPA. Mepolizumab is one of the primary therapies for EGPA. They talked about not making treatment changes as they were navigating what was happening.   [25:40] They didn't want to make a change of medication and then have that be mistaken for disease activity. They didn't want too many variables moving at once.   [25:47] Typically, the first-line therapy is steroids, meant to help with the swelling, pain, and tightness that patients will get lining their muscles and give them a bit more functionality and decreased pain.   [26:00] Long-term, Dr. Sims gives immunosuppressant medication. She prescribed methotrexate for Jason. In EF, the immune system is overly activated, attacking the lining of the muscles and causing the symptoms.   [26:51] If you suppress the immune system activity, that leads to decreased inflammation and symptoms in the patient. Steroid use, over a few months, is detrimental, with low bone density, weight gain, high blood pressure, and diabetes.   [27:14] Dr. Sims starts with prednisone and folds in medications like mycophenolate or methotrexate.   [27:19] Mepolizumab is an interleukin 5 blocker. Interleukin 5 is part of the immune system and is necessary for eosinophils to grow, function, and multiply. The goal of using mepolizumab is to lower the eosinophils that are contributing to the disease symptoms.   [27:48] Methotrexate, prednisone, and mepolizumab can work synergistically or independently. Most rheumatologists start with methotrexate or mycophenolate which have fewer side effects and have been around longer. We know how to manage those.   [28:08] If there is no response, we may add something like mepolizumab. As Jason was already on mepolizumab, Dr. Sims added methotrexate.   [28:20] IVIG, an infusion of immunoglobulin, has also been used as a quick way to control inflammation. It is used in other autoimmune diseases like myositis, which is inflammation of the muscle itself.   [29:08] With untreated eosinophilic fasciitis, the lining of the muscle may continue to be inflamed and can lead to fibrosis, damage that cannot be reversed. The patient can become very disabled. Contracture is one result of this.   [30:16] Jason says when he tried a new medication, he monitored if it was a good fit and if the side effects were less impactful than the underlying disease. Dr. Sims adjusted his dosages or tried to get off certain medicines as needed.   [30:59] After his muscle biopsy from his left calf, it took about a month to get back to walking easily. He was already in physical therapy, going many times for a variety of things. He had back pain, potentially related to his EF. His physical therapist was great.   [31:56] The stretches alternated between upper and lower body. Jason bought tools to do the stretches at home. When he's not feeling as well, he goes back to some of those same stretches. When he was on steroids, he took long walks to strengthen his bones.   [32:39] Jason started making phone calls to supportive family and friends on his walks and started listening to podcasts related to his condition or medications. Getting back to tennis and hiking is important to Jason. He's happy to be out there.   [33:20] Jason was open with his employer about his condition. Some of the weekly meds can make him not feel well. His employer gives him some flexibility. He has good days that far outnumber the bad days. He doesn't have to think about EF too much now.   [34:33] It's nothing like when he was in a flare, especially when he was in a flare before being diagnosed. What gets him through a bad day is giving himself some grace and understanding while he waits for his meds to catch up. He rests more than he wants to.   [35:33] Low-impact exercises like walking help Jason. He's trying to find a support network that gets EF. That led him to APFED, to find anyone experiencing something like what he was. He saw a conference that included a session on EF.   [36:09] Jason signed up for the conference and there he met Ryan's mother who has EF. They were each the first person the other had met with EF. They decided to connect after the conference. They talked on the phone for about an hour.   [36:39] She told Jason how she got into APFED and talked a lot about her son who had eosinophilic diseases. Soon after, Jason talked to Ryan as a primer for this podcast.    [38:15] Having a community to relate to, even if it's one person, is massive. It can make you feel less isolated.   [38:42] Holly says it's hard having a chronic illness. She thanks both Jason and Dr. Sims for sharing so much information and their journey and she asks for last words.   [38:58] Dr. Sims believes finding a community is critical. She interviews a lot of patients for research and isolation is a frequent theme. Even the doctor doesn't know what it's like to live with the condition you live with daily. As Jason said, give yourself grace.   [39:33] Dr. Sims tells her patients that they're different from the general population because they have to spend so much time and energy managing their condition that they can't do x, y, or z today, and that is OK. She says to stay motivated and positive.   [40:12] Find what works for you. Walking is good for your physical and mental health. Have the goal of getting back to what makes you happy. Take initiative and find non-medication ways to recuperate. You have control over ways you can feel better.   [40:43] Connect with others and share your story, like Jason did today. It may make someone's journey a little easier and make them feel less alone. Utilize your condition for good, for a bigger purpose.   [41:04] Jason had wished he could meet someone who could tell him what EF would be like over the years. He says to stay positive and find out what you have control over. Jason believes the future is bright for being able to do many things for a long time.   [42:26] For our listeners who would like to learn more about eosinophilic fasciitis, please visit APFED.org and check out the links in the shownotes.   [42:33] If you're looking to find a specialist who treats eosinophilic disorders, like Dr. Sims, you can use APFED's Specialist Finder at APFED.org/specialist.   [42:43] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at APFED.org/connections/.   [42:55] Ryan thanks Jason and Dr. Sims for joining us for this excellent conversation. Holly also thanks APFED's Education Partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron for supporting this episode.   Mentioned in This Episode: Dr. Catherine Sims, rheumatologist Duke University Hospital Durham VA Medical Center   APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Real Talk: Eosinophilic Diseases Podcast apfed.org/specialist apfed.org/connections   Education Partners: This episode of APFED's podcast is brought to you thanks to the support of Bristol Myers Squibb, GSK, Sanofi, and Regeneron.   Tweetables:   “EF patients may present with large plaques on their skin, edema of arms and legs, Raynaud's Phenomenon, contractures of arms or legs, limited mobility, or loss of the ability to do tasks they used to do.” — Dr. Catherine Sims   “Steroids are … first-line therapy. Their role is the quick control of inflammation. The goal is always to get you off steroids as soon as possible, in the safest way possible.” — Dr. Catherine Sims   “Methotrexate, prednisone, and mepolizumab can work synergistically or independently. Most rheumatologists start with methotrexate or mycophenolate which have fewer side effects and have been around longer.” — Dr. Catherine Sims   “Stay positive and find out what you have control over. The future is bright for being able to do many things for a long time.” — Jason Ingraham

Dr. Jack Cush reviews the news, journal articles and a new FDA approval for EGPA, this week on the Podcast.

This content has been developed for healthcare professionals only. Patients who seek health information should consult with their physician or relevant patient advocacy groups.For the full presentation, downloadable Practice Aids, slides, and complete CME/MOC information, and to apply for credit, please visit us at PeerView.com/TTA865. CME/MOC credit will be available until July 18, 2025.Recognizing the Burden of Patients Living With EGPA: An Exploration of Best Practices in Diagnosis and Treatment in the Context of a Multidisciplinary Approach In support of improving patient care, this activity has been planned and implemented by PVI, PeerView Institute for Medical Education, and Campaign Urging Research for Eosinophilic Disease. PVI, PeerView Institute for Medical Education, is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.SupportThis educational activity is supported by an independent medical education grant from GSK.Disclosure information is available at the beginning of the video presentation.

This content has been developed for healthcare professionals only. Patients who seek health information should consult with their physician or relevant patient advocacy groups.For the full presentation, downloadable Practice Aids, slides, and complete CME/MOC information, and to apply for credit, please visit us at PeerView.com/TTA865. CME/MOC credit will be available until July 18, 2025.Recognizing the Burden of Patients Living With EGPA: An Exploration of Best Practices in Diagnosis and Treatment in the Context of a Multidisciplinary Approach In support of improving patient care, this activity has been planned and implemented by PVI, PeerView Institute for Medical Education, and Campaign Urging Research for Eosinophilic Disease. PVI, PeerView Institute for Medical Education, is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.SupportThis educational activity is supported by an independent medical education grant from GSK.Disclosure information is available at the beginning of the video presentation.

This content has been developed for healthcare professionals only. Patients who seek health information should consult with their physician or relevant patient advocacy groups.For the full presentation, downloadable Practice Aids, slides, and complete CME/MOC information, and to apply for credit, please visit us at PeerView.com/TTA865. CME/MOC credit will be available until July 18, 2025.Recognizing the Burden of Patients Living With EGPA: An Exploration of Best Practices in Diagnosis and Treatment in the Context of a Multidisciplinary Approach In support of improving patient care, this activity has been planned and implemented by PVI, PeerView Institute for Medical Education, and Campaign Urging Research for Eosinophilic Disease. PVI, PeerView Institute for Medical Education, is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.SupportThis educational activity is supported by an independent medical education grant from GSK.Disclosure information is available at the beginning of the video presentation.

This content has been developed for healthcare professionals only. Patients who seek health information should consult with their physician or relevant patient advocacy groups.For the full presentation, downloadable Practice Aids, slides, and complete CME/MOC information, and to apply for credit, please visit us at PeerView.com/TTA865. CME/MOC credit will be available until July 18, 2025.Recognizing the Burden of Patients Living With EGPA: An Exploration of Best Practices in Diagnosis and Treatment in the Context of a Multidisciplinary Approach In support of improving patient care, this activity has been planned and implemented by PVI, PeerView Institute for Medical Education, and Campaign Urging Research for Eosinophilic Disease. PVI, PeerView Institute for Medical Education, is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.SupportThis educational activity is supported by an independent medical education grant from GSK.Disclosure information is available at the beginning of the video presentation.

This content has been developed for healthcare professionals only. Patients who seek health information should consult with their physician or relevant patient advocacy groups.For the full presentation, downloadable Practice Aids, slides, and complete CME/MOC information, and to apply for credit, please visit us at PeerView.com/TTA865. CME/MOC credit will be available until July 18, 2025.Recognizing the Burden of Patients Living With EGPA: An Exploration of Best Practices in Diagnosis and Treatment in the Context of a Multidisciplinary Approach In support of improving patient care, this activity has been planned and implemented by PVI, PeerView Institute for Medical Education, and Campaign Urging Research for Eosinophilic Disease. PVI, PeerView Institute for Medical Education, is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.SupportThis educational activity is supported by an independent medical education grant from GSK.Disclosure information is available at the beginning of the video presentation.

This content has been developed for healthcare professionals only. Patients who seek health information should consult with their physician or relevant patient advocacy groups.For the full presentation, downloadable Practice Aids, slides, and complete CME/MOC information, and to apply for credit, please visit us at PeerView.com/TTA865. CME/MOC credit will be available until July 18, 2025.Recognizing the Burden of Patients Living With EGPA: An Exploration of Best Practices in Diagnosis and Treatment in the Context of a Multidisciplinary Approach In support of improving patient care, this activity has been planned and implemented by PVI, PeerView Institute for Medical Education, and Campaign Urging Research for Eosinophilic Disease. PVI, PeerView Institute for Medical Education, is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.SupportThis educational activity is supported by an independent medical education grant from GSK.Disclosure information is available at the beginning of the video presentation.

Description: Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Mary Jo Strobel, APFED's Executive Director, have a conversation about EOS Connection 2024, live at the conference.   In this episode, Ryan and Mary Jo discuss highlights of EOS Connection 2024 including Ryan receiving the Founder's Award with his friend Zach, meeting many new patients and their families, and speaking with the wonderful researchers and presenters. They discuss the status of EoE as a rare disease, and how the awareness of many eosinophilic disorders is spreading. Ryan shares some of his childhood memories of the EOS Connection conference and how great it is to see so many young patients participating in the kids and teen program. Ryan and Mary Jo discuss conference session highlights, including multidisciplinary care teams, the transition from pediatric to adult care, and coping with chronic illness. They invite you to register to watch recordings of the conferenc, which will be available until the end of 2024. Listen in for more information about the EOS Connection 2024 conference.   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: [:50] Ryan Piansky introduces the episode. He and co-host Mary Jo Strobel are live from EOS Connection 2024, APFED's annual patient education conference.   [1:14] Mary Jo Strobel is happy to join Ryan for a wrap-up of key highlights and congratulates Ryan on receiving the Founder's Award. It was a joy for Mary Jo to present the award to Ryan.   [1:38] It was a nice surprise for Ryan. Beth, one of the founders, gave a lovely speech about Ryan and Zach, the other award recipient. Ryan has known Zach for 20-plus years and they are life-long friends. They've known Beth for just as long. It was perfect.   [2:23] Ryan's highlights of this year's conference were going down memory lane looking at the photos in the award presentation, meeting a lot of new patients and families, talking about experiences, and speaking with the wonderful researchers and speakers.   [3:13] Mary Jo appreciated how the speakers delivered their messages in a way that was easy to understand. It was great to have them involved in the conference.   [3:27] Mary Jo found it interesting when Dr. Spergel said on Friday that EoE may not be considered a rare disease for much longer and he raised the question: Is prevalence rising or are more people being diagnosed from better awareness around EoE?   [3:57] Ryan also says it's interesting to hear. APFED doesn't want to be necessary. Ideally, everyone can see their pediatrician, get the diagnosis early, and get treatment early, not only for EoE but for everything else.   [4:16] So many children come to APFED now, diagnosed early and on treatment options. On the adult side, so many people are coming to APFED saying they've lived with symptoms for years, not knowing what it was, and now have a diagnosis.   [4:51] While EoE is becoming more common, there are the rarer eosinophilic subsets to talk about, HES (hypereosinophilic syndrome), eosinophilic fasciitis, and EGPA (eosinophilic granulomatosis with polyangiitis).   [5:50] Dr. Amy Klion joined the conference virtually but attended the reception onsite. She is crucial to some of the rare eosinophilic disease research projects.   [5:59] Mary Jo found Friday's conversation with Drs. Sauer and McGowan about the management of EoE patients to be intriguing, in particular, when it was recognized that the GI and allergist might not always agree on approaches to treatment.   [6:09] There was a lot of excitement around less-invasive diagnosistics. Mary Jo says it was fun to see the videos of Drs. Sauer and McGowan trying the string test.   [6:25] Ryan has not yet tried the string test. It was fun for him to see that video of the two doctors trying it. The two doctors also shared their experience trying a six-food elimination diet. It was wonderful to have both doctors at the conference.   [6:47] Holly Knotowicz could not join the podcast today but she and Ryan have talked before on the podcast about the importance of multidisciplinary care teams and how crucial they can be.   [6:57] It was wonderful to hear from the doctors that they are working on multidisciplinary care teams on the pediatric side, through the transition process, and onto the adult side. Ryan hopes they can create a roadmap for other facilities to follow.   [7:13] In the string test, the doctors both gagged at the end, but they made it through and both said their patients do a better job going through it with a straight face! The string test is now available at multiple U.S. sites.   [7:42] For Mary Jo, it was fun to see so many kids and teens on site enjoying themselves in the activities and the mentorship they were having. A robotics team came on site. There was a fun Family Feud-style game.   [8:11] Ryan says the activities were absolutely crucial for him growing up. It was one of his favorite parts of the conference, coming back year after year, being with his friends again in an environment where he was able to feel so normal and among peers.   [8:29] Ryan says you can lead a pretty normal life with EoE or other eosinophilic disorders, but it's not something your school peers can relate to. Coming to the conference is so impactful. Ryan heard multiple kids say, “Wow, you're just like me!”   [8:46] For Ryan, it's amazing that the conference can offer that environment for everybody. Ryan says it's wonderful to have the teen program with so many volunteers to help. Ryan met Zach in a kids and teen program and now he helps run them. [9:13] Many incredible volunteers came to help; Ryan mentions some by name. It's wonderful that the conferences have been able to create such a tight-knit community for these patients. [9:24] Mary Jo appreciated the volunteers doing the kids and teen programming this year for the conference and Amelia coming on-site as well.   [9:38] Mary Jo liked the talk on coping with chronic illness and Dr. Kichline's advice that you may not be able to change the situation but you can change how you react to it. It's important for children to learn and adults to remember; you are not your disease.   [10:06] Ryan remembers that point being emphasized when he was young. Thanks to APFED, we have a mentality here that you're a kid first and then you also have to deal with allergies, medicines, and doctors' appointments.   [10:18] We want to make sure that you can enjoy school, enjoy your childhood, go out, hang out with friends, and be who you want to be without having to have EoE at the forefront of your identity.   [10:32] That goes for all the other eosinophilic disorders and into adulthood. Those who were diagnosed 20 years ago are entering the workplace and figuring out how to be an adult with EoE. We have our lives first and part of that is managing this chronic illness.   [10:55] Ryan says it was wonderful that they were able to talk to the disability lawyer. Part of the management of chronic illness is making sure that you can be an adult or a kid and have financial support through something like SSI or employer-based disability.   [11:20] Mary Jo comments on the terrific presentations on the virtual day. It was great to hear from Dr. Fussner about EGPA. That tied in well with the new EGPA Toolkit that APFED launched this week in collaboration with the Vasculitis Foundation.   [11:47] You can find the new EGPA Toolkit at APFED.org.   [11:59] Ryan thinks it's exciting that the conference highlighted some of the more rare eosinophilic disease subsets. On the virtual day, presenters talked about EGPA, HES, eosinophilic asthma, and eosinophilic fasciitis.   [12:12] Eosinophilic fasciitis is so rare. Two people were chatting in private messages beside a presentation that they had never talked to someone else with eosinophilic fasciitis. Ryan also saw there were multiple HES patients in person this year.   [12:30] Ryan states that it is exciting to see patients even with these rare disease subsets being able to come together and hear about the latest research.   [12:37] Mary Jo answers that's why we call it EOS Connection! Ryan agrees; we're making those patient connections even among these rare subsets.   [12:47] Mary Jo had a fantastic time at the conference. She learned a lot and she hopes Ryan and everybody watching did, as well. [12:57] If you did not participate in the live events, Mary Jo and Ryan encourage you to visit APFED.org/conference and register to access the virtual conference to watch the recordings and explore the virtual poster hall and exhibit hall, through the end of 2024.   [13:21] Ryan thanks our education partners for supporting this event. It was wonderful to have so many people here; he hopes everyone was able to enjoy the virtual event.   Mentioned in This Episode: EOS Connection 2024 Conference APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Real Talk: Eosinophilic Diseases Podcast apfed.org/egids apfed.org/specialist apfed.org/connections   Tweetables:   “It was so wonderful to hear from doctors working on multidisciplinary care teams on the pediatric side, through the whole transition process, and onto the adult side. I hope they can create a roadmap for other facilities.” — Ryan Piansky   “It was fun to see so many kids and teens on site enjoying themselves in the activities and the mentorship they were having.” — Mary Jo Strobel   “We have the new EGPA toolkit resource that we launched this week in collaboration with the Vasculitis Foundation. You can find that resource on APFED.org.” — Mary Jo Strobel   “It's exciting that we were able to highlight some of these more rare disease subsets. In the virtual format, where we're able to reach so many more people, we talked about EGPA, HES, eosinophilic asthma, and even eosinophilic fasciitis.” — Ryan Piansky

#43. Oversiktsepisode. Granulomatose med polyangiitt (GPA) og mikroskopisk polyangiitt (MPA). Eosinofil granulomatose med polyangiitt (EGPA) omtales i en senere episode.Andre sesong er muliggjort gjennom et stipend fra Norsk revmatologisk forening. Hosted on Acast. See acast.com/privacy for more information.

In this podcast, expert clinicians will discuss the latest evidence regarding EGPA therapy, as well as current guideline recommendations. 

In this podcast, expert clinicians discuss the spectrum of potential EGPA clinical manifestations. 

In this podcast, expert clinicians discuss the differential diagnosis of EGPA, reviewing the utility of various diagnostic modalities that can differentiate EGPA from other hypereosinophilic diseases or ANCA-associated vasculitides. 

(Actualidad Médica 27) La granulomatosis eosinofílica con poliangeítis, previamente conocida como síndrome de Churg-Strauss, es un tipo de vasculitis que se define histológicamente por un infiltrado rico en eosinófilos, con inflamación necrosante granulomatosa que compromete principalmente el tracto respiratorio, asociado a una vasculitis necrosante de arterias de mediano y pequeño tamaño. Esta es considerada una forma de vasculitis anca. En este caso, los anca se detectan entre un 40-60% de los pacientes, y usualmente son dirigidos contra la mieloperoxidasa.ENLACE: https://bit.ly/3QQU5gZ

Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Holly Knotowicz, a speech-language pathologist living with EoE, who serves on APFED's Health Sciences Advisory Council, have a conversation about the Spoon Theory. In this episode, Ryan and Holly discuss the origin of the Spoon Theory, their experiences, and what the Spoon Theory means in their lives.   Listen to this episode to learn how the Spoon Theory could work for you. 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: [:50] Ryan Piansky and co-host Holly Knotowicz introduce the topic of today's episode, the Spoon Theory. Both Ryan and Holly will discuss their experiences.   [1:39] About ten years ago, fatigue became a challenge for Holly. As she researched options for managing her fatigue, Holly came across the Spoon Theory, a tool she uses and teaches now in conferences and talks.   [2:05] The Spoon Theory is a story written and copyrighted by Christine Miserandino in 2003 to help explain how chronic illness affects the amount of physical and or mental energy a person has available for daily activities and tasks and how it can be limited.   [2:28] About a year ago, in a Community Conversations episode of APFED's podcast, guest Ashley Spencer discussed EGPA. Ashley and Holly brought up the Spoon Theory. Ryan calls the Spoon Theory a digestible way to convey the effect of living with fatigue from chronic illness.   [2:46] Holly shared how Christine Miserandino developed the Spoon Theory while at brunch with a friend. Her friend asked Christine how she was coping living with lupus. Christine grabbed all the spoons from the table and explained that each task throughout the day costs a spoon.   [3:21] Christine asked her friend to walk through every activity of her morning. As her friend started talking about the different things she does, Christine would remove a spoon from her pile of 12 spoons. When dinnertime came, there was only one spoon. That limited her choices for dinner; this was long before dinner delivery services.   [4:19] Through this exercise, Christine's friend learned how chronic illnesses use up a lot of energy just from existing. For listeners who want to read more, please check out Christines' website, ButYouDontLookSick.com, linked in the show notes.   [4:33] Ryan sees the Spoon Theory as an easy way to convey what living with a chronic illness is like. He asks, why is it 12 spoons? Does everyone have the same number of spoons? In interviews, Christine has said 12 was the number of spoons on the table but it is a good representation of the limited supply people with chronic illnesses have.   [5:07] According to the theory, healthy people have an “unlimited” supply of spoons, while people with chronic illnesses have to ration their spoons to get through the day. Everybody's number is slightly different but the theory uses 12.   [5:22] Ryan shared a story about seeing his sister during the holidays. She doesn't have a chronic illness. She seems to have unlimited spoons for activities she plans, while Ryan may run out of spoons around 10:00 a.m.   [5:46] Ryan asks if it is always the same number of spoons per day. Holly says your baseline number is about 12 spoons. It can vary if you borrowed spoons from the day before or if you have spoons left over from the day before. Some say on a good day, you might wake up with 20 spoons but a bad day would start with 12 spoons.   [6:34] Holly explains about borrowing spoons. If you run out of spoons on one day, before you finish your activities, you might borrow spoons from the next day by canceling a planned activity for the next day. Holly also explains it to people as a lending library.   [7:49] When Ryan was young, he attended the APFED patient education conference every year. He recommends it. His parents warned him not to overextend himself but to take it easy and rest during the day. At every conference, he just kept going for 12-plus hours. When he got home, he would crash for a day. He had used up all his spoons!   [8:36] Ryan asks what happens when you run out of spoons. Holly shares that when you run out of spoons, your body might have a flare-up, or be more susceptible to getting sick because you've become rundown. [9:10] It can also lead to comparison with others and feeling sad or anxious because you don't have the energy that healthy people around you have. For the average person with chronic illness, cooking from scratch from a recipe could be three or four spoons. [9:51] For someone with a specialized diet, that could double. You're not just reading the recipe, you have to think about substitutions and go buy them. You have to know if the recipe will taste good with substitutions. It's mentally exhausting to follow recipes for specialized diets.   [11:04] Holly is an extrovert but sometimes being with people can take too many of her spoons, so she carefully plans her socializing. Being with good friends might take three spoons. Presenting at a conference takes more spoons. Walking a dog could take two spoons. Taking medication or brushing her teeth could take one spoon.   [12:10] For children with chronic illness, going to school might take four of their spoons. Playing soccer might take five spoons, so at times they don't have the energy. This can result in absences from school because they want to have typical social lives but don't have the energy and reserves to do so. It's the same for adults but it's a hard fact for children.   [12:53] Ryan was diagnosed with EoE at age two. Ryan thinks back to high school. He woke up at 6:15 every day to get to high school before 8:00. Getting to school on time probably took most of his spoons. The rest of the day was exhausting. He never did any extracurriculars in high school. By 3:00, he was down for the count.   [13:50] If Ryan's friends wanted to spontaneously do something after school, he often had to refuse. He needed a few days to prepare physically and mentally for extra activities. Having something sprung on him at the last minute drained more of his spoons. He would like to have had the Spoon Theory to explain it to his friends.   [14:52] Holly says there is a mental aspect to having a chronic illness. You have to think about things in advance, especially people living with eosinophilic diseases and/or those who have specialized diets. To consider going out to a meal, you might have to research a restaurant in advance or even talk to the chef. Thinking about and making these phone calls requires spoons.   [16:06] Recently Ryan planned to go out with friends. After they picked a restaurant and Ryan chose what he would order, the friends decided to try a different restaurant. Ryan had to check the menus of six other restaurants before they settled on the original one. The extra effort depleted Ryan's energy and he just sat quietly during dinner.   [19:14] Ryan didn't push himself to be social because it would have eaten into his reserve spoons for the following day. As it was, he slept in the next day.   [20:07] Ryan has had days where he has had to use up the next day's spoons, and then had the next day be equally busy.    [20:28] The Spoon Theory can be applied to different chronic illnesses. Most of them are invisible illnesses. It makes sense that Christine's website is named ButYouDontLookSick.com.   [21:29] Holly loves that the Spoon Theory provides a visual representation of how our energy works and how we can manage it. Because many chronic illnesses are invisible, people don't always understand why we have to cancel, abort, or decline plans. We often have to prioritize activities to protect our health. It's a different standard.   [22:10] We prioritize activities to protect our health and how we feel. Holly uses the Spoon Theory to explain why she declines plans in advance when she has too many things scheduled. She wouldn't be her best self. Holly rarely schedules anything for after an eight-hour workday.   [22:55] Holly thinks of herself as a dynamic person who brings a lot to the table. She doesn't want to be in an activity where she can't participate fully. It reflects on how much her diagnosis seeps into her life. She doesn't like to share her EoE with everybody, even though many people in her life know it and she does this podcast!   [23:25] Over the last six months, Holly's goal has been to map out her week to keep her energy consistent. She plans when to work out in the morning, when to see patients, and when to fly for international conferences. She gives herself a rest day after the flight or she stumbles and mumbles during the presentation. This means she often declines dinner invitations.   [24:45] Holly will accept invitations to destination weddings but then will not book anything extra for a week afterward or she knows she will get sick. It's a pattern.   [25:28] Ryan says sometimes people can tell when he's not at his best, but for the most part, he looks relatively healthy. He's up and about, at meetings and conferences but it's such a limited amount of energy that he has available. It's hard for people with unlimited spoons to gauge how many spoons Ryan has left.   [25:57] Holly often presents at medical conferences about feeding therapy, eosinophilic diseases, food allergies, FPIES, and tube feeding, and she incorporates the Spoon Theory into some of her talks. She has spoons at the podium and starts dropping them as she goes, holding one or none by the end. That's when questions come.   [27:25] Holly likes people to know that when they're working with kids with chronic illness, it's important to pace out their therapy. For example, give a patient two things to work on until the next time, not ten, to be successful.   [28:50] Ryan clusters his multiple specialist annual visits at the start of the fall semester and at the beginning of the spring semester. That means he misses some classes and lectures at the beginning of each semester. It is draining. Tests eat up half his spoons for the day.   [30:35] Holly shares how applying the Spoon Theory impacts managing her health. The Spoon Theory helps her create and maintain boundaries. She adamantly tries to stick to a schedule that rarely depletes her spoons per day. It's still a work in progress. Holly has a therapist who is helping her work on it.   [31:08] Holly schedules social things on days when she has little to no other obligations. She has to maintain that schedule. She has good days and sometimes great weeks which leads her to add more to her plate, but then she runs out of spoons more quickly because she's borrowing from the next day. Eventually, she has no spoons to borrow.   [31:42] Holly went on vacation for her birthday and then last week she was doing great, taking some urgent referrals for babies. This week, she had to cancel things. She is learning that she needs to schedule time to recharge and rest even on good days.   [32:26] Holly has learned there are ways to increase your number of spoons. The most important things are to be compliant with treatment and follow a specific diet (if recommended). A lot of chronic illnesses have a specific researched diet to help you stay healthy. When you have a cheat day, you're harming yourself by taking spoons from your next day.   [33:31] Working out helps with anxiety and depression. There are physical and mental health benefits. Holly started tracking over the last eight months how many spoons working out earned for her, compared to the spoon it took from her. She finds that it adds three to five spoons to her daily reserve. The endorphins boost her energy.   [34:14] Ryan agrees. He goes to the gym at least twice a week. If he misses a day, he feels worse. He goes out for a walk on days he's not going to the gym just to get moving and he feels better after that. Being stuck inside all day is mentally draining as well. Going for a walk takes extra effort but it does feel better.   [35:32] Ryan and his mother have similar food allergy issues so they both carefully stick to their diet. If they vary their diets on vacation, even without eating triggers or allergens, they feel physically bad for a few days until they get back to their usual diets.   [36:28] Once Holly learned about this theory and was making new contracts, she realized that there may be times when she might have to cancel and reschedule. When she sends an email about an engagement, she includes an article on the Spoon Theory and describes what she is struggling with, in case she has to reschedule.   [37:42] The Spoon Theory is a good way to describe to friends or family why the person with the chronic illness isn't hosting the holiday but may need to go to a room and rest at the host's home. It's a tool to inform loved ones and friends so they can be supportive. It's a different way to share our struggles with our chronic illness. [38:27] When Ryan meets people and tells them about his health issues, he might say he has food allergies but then also explain how his conditions lead to a limited supply of energy, and then tell about the Spoon Theory. It's a helpful tool we can all use, going forward.   [39:08] Our listeners can learn more about the Spoon Theory by going to Christine Miserandino's website, ButYouDontLookSick.com.    [39:47] To learn more about eosinophilic disorders, visit APFED.org. If you're looking for a specialist who treats eosinophilic disorders, use APFED's specialist finder at APFED.org/Specialist. [40:05] To connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at APFED.org/Connections.   [40:14] Ryan thanks Holly for sharing information about the Spoon Theory. It means a lot to Holly that we have a platform to reach a lot of people. Holly hopes if you are struggling with a chronic illness that you are not alone and you can use this tool to bring your loved ones and friends closer. Maybe weed out the people who aren't helping.   [41:15] Holly thanks APFED's education partners, AstraZeneca, Bristol Myers Squibb, GlaxoSmithKline, Sanofi, and Regeneron, linked below, for supporting this episode.   [41:26] Ryan shares how he just met his partner's friend and by discussing symptoms while picking a place to eat, it turns out she was diagnosed last year with EoE. It's unusual for him to meet people with EoE out there randomly. Ryan is glad to be creating this resource for people. Holly agrees 1,000%.   Mentioned in This Episode: Christine Miserandino ButYouDontLookSick.comAmerican Partnership for Eosinophilic Disorders (APFED) APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Real Talk: Eosinophilic Diseases Podcast APFED.org/Specialist APFED.org/Connections   Education Partners: This episode of APFED's podcast is brought to you thanks to the support of AstraZeneca, Bristol Myers Squibb, GlaxoSmithKline, Sanofi, and Regeneron.   Tweetables:   “Approximately 10 years ago, fatigue became a real challenge for me and as I researched options on how to manage fatigue, I came across the spoon theory, which is what we're going to specifically discuss today.” — Holly Knotowicz   “[The Spoon Theory] is such an interesting story and it feels like such an easy way to convey what living with a chronic illness is like.” — Ryan Piansky “We all have people in our lives whom we love dearly, but they could maybe be taking too many of our spoons, so you have to be thoughtful about when you plan time with them.” — Holly Knotowicz  

Am 29. Februar ist der „Tag der Seltenen Erkrankungen“. Wer von einer solchen betroffen ist, hat meist einen langen Leidensweg hinter sich. Weil die Erkrankungen so selten sind, werden sie häufig erst spät erkannt und entsprechend gezielt behandelt. Etwa 6.000 Seltene Erkrankungen gibt es, im Podcast mit dem Immunologen Dr. Peer Aries stellen wir zwei davon vor, abgekürzt EGPA und HES.

– Let's learn together with Pr. Benjamin Terrier.

”Your words can either heal or hurt. Don't you ever be the prick.”Blaze Hunter is an author, award winning speaker, brand specialist, and maybe most importantly, a communications expert. In this episode, Blaise discusses the connection between emotions and the body, and how it plays a role in autoimmune disease. Blaise was diagnosed in her 20's with EGPA, a rare autoimmune disease that affects the lungs. At the time she was working as a television broadcaster and her disease tried to take her voice - but she had none of that. Now she literally roars on stage as she turns her pain into purpose. And she's bringing some of that passion to us.Discussed in this week's episode:The importance of listening to your body and understanding its signals.Blaise shares her personal journey of how her body's signals led to a deeper understanding of herself and her emotions. How Blaise turned her pain into purpose and her work in helping others communicate compassionately with each other - and with themselves.Her work in reproductive health rights and how she empowers others to breathe fire. Connect with Blaise: https://www.blaisehunter.com/For more on today's guest and transcripts of this episode, visit: Live Your Life, Not Your Diagnosis PodcastConnect with Andrea:Join the waitlist for the 8 Week Mindset Challenge: https://andreahansoncoaching.com/coursesGrab the FREE Resource from Andrea: "The No BS Guide to a Positive Mindset" https://andreahansoncoaching.com/nobsguide/Do you have questions or topics you would like covered in the podcast? Reach out to https://andreahansoncoaching.com/contactLike the podcast? Get the books! Andrea's books, Live Your Life, Not Your Diagnosis and Stop Carrying the Weight of Your MS are here: https://andreahansoncoaching.com/getthebookConnect with Andrea on Instagram: @AndreaWHansonConnect with Andrea on LinkedIn: @AndreaWHanson✳️ Don't forget to subscribe to the podcast. Please note this podcast does not promote any specific therapy. Consult your doctor before making any changes to your medications, therapies, and treatments. The ideas and stories discussed in this podcast are the host and guest's personal opinions and experiences only and is not intended to diagnose or treat any illness. Listener discretion is advised.

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A breakdown of what Eosinophilic Granulomatosis with Polyangiitis is and what you need to know as a patient as well as insight from patients on life with EGPA. Here's what you'll find in this episode: What is EGPA? What are the symptoms of EGPA? Complications from EGPA How is EGPA Diagnosed? How is EGPA treated? Side effects from the medications Can EGPA come back? Life with Vasculitis Patient to Patient Please don't forget to click that subscibe button whereever you listen to the podcast and do me a HUGE favor and leave a review! These two things help others find the podcast, find our community, and feel a little less alone in their journey through life with chronic illness! Join us on Instagram: https://www.instagram.com/teamvasculitis Join the Email List: https://teamvasculitis.com/team-vasculitis-email Sources: https://www.mayoclinic.org/diseases-conditions/churg-strauss-syndrome/symptoms-causes/syc-20353760 https://rarediseases.info.nih.gov/diseases/6111/eosinophilic-granulomatosis-with-polyangiitis https://my.clevelandclinic.org/health/diseases/7098--eosinophilic-granulomatosis-with-polyangiitis-egpa-formerly-churg-strauss-syndrome  

In this podcast, expert clinicians will review the underlying immunopathology and various clinical presentations of EGPA and discuss its impact on patient quality of life.

In this podcast, expert clinicians will examine diagnostic approaches that can be used to distinguish EGPA from other vasculitides and hypereosinophilic conditions.

In this podcast, expert clinicians will discuss evidence-based practices on the appropriate use of glucocorticoids, immunosuppressants, and targeted therapy for induction and maintenance of remission in severe and non-severe forms of EGPA. 

In this podcast, expert clinicians will review clinical cases of varying severity to highlight evidence-based approaches for management of EGPA. 

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 Florence Roufosse, MD, PhD, Professor of Medicine, Internist and Clinical Immunologist at CUB-Hôpital Erasme, Brussels, and President, International Eosinophil Society. In this episode, Ryan and Holly discuss with Dr. Roufosse some of the many unmet needs related to eosinophil-associated diseases. The discussion covers diagnosis, treatment, access to multi disciplinary care, research, and awareness. Dr. Roufosse identifies specific questions she sees an urgency to address and discusses clinical trials. Listen in for a better understanding of some of the unmet needs of patients with eosinophil-associated diseases. 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: a global look at eosinophilic diseases and unmet needs.   [1:28] Holly introduces Dr. Florence Roufosse. Dr. Roufosse is a professor of medicine, an internist, and a clinical immunologist at Erasme Hospital in Brussels and is President of the International Eosinophil Society.   [1:43] In addition to her clinical work, Dr. Roufosse leads translational research projects to improve the understanding and treatment of hypereosinophilic syndromes (HES). She is also involved in international clinical trials evaluating treatment options for patients living with HES and eosinophilic granulomatosis with polyangiitis (EGPA).   [2:18] Dr. Roufosse is an internist working in an academic hospital. An internist is a diagnostician, whom people see if they have many complaints that involve various organs to find a unifying diagnosis for their problems.   [2:47] Dr. Roufosse's interest in eosinophils started when she met Dr. Elie Cogan. He had just published a case report on a patient with hypereosinophilic syndrome who also had T-lymphocytes present. The T-cells were producing growth factors for eosinophils.   [3:21] The hypereosinophilic syndrome in the patient was due to these abnormal T-lymphocytes. The case was in 1996. Dr. Cogan asked Dr. Roufosse if she would agree to do a doctoral fellowship on the topic and try to dive deeper into understanding the disease in this patient.   [3:37] Dr. Roufosse has been working on HES ever since, doing translational research, working with blood samples from patients she sees in the clinic, and studying the cells functionally and on a molecular basis. Dr. Roufosse is foremost a clinician who sees patients in the clinic every day.   [4:00] Dr. Roufosse regularly gets referrals for HES and EGPA. She has a large cohort of patients. Her main job consists of reaching a diagnosis and giving the best treatment to these patients.   [4:44] The main mission of the International Eosinophil Society (IES) is to bring together clinicians, investigators, and researchers interested in eosinophils and eosinophilic disorders. The society held its first meeting in 2001. The pandemic prevented them from celebrating their 20th anniversary in person, but they will meet this summer.   [5:20] IES brings together clinicians who see patients and people who investigate eosinophils in the lab. Close interactions between clinicians and investigators drive the motivation to understand the biology of these disorders, find the therapeutic targets, and work together, combining findings to make progress.   [6:52] There are common unmet needs for eosinophilic diseases and specific unmet needs for individual diseases. Transitioning from pediatric to adult care is an unmet need in eosinophilic esophagitis because the disease begins in childhood. However, eosinophilic syndrome and EGPA occur most commonly in adults.   [7:51] Diagnosis is a bottleneck. When people get the right diagnosis, they are already well on their journey of receiving treatment. Diagnosis combines the need for increased awareness among patients, the public, and physicians. A delayed diagnosis may have consequences for patients, such as a progressive disease that is not controlled.   [8:31] High levels of eosinophils have the potential to damage organs and induce functional damage and functional alterations. They favor fibrosis. The longer eosinophils stay at high levels, the more harm can occur, so there is a consequence in delayed diagnosis.   [8:55] Patients with high eosinophils in blood and tissues will often receive corticosteroid therapy. This is good for a few days but there are numerous side effects to corticosteroid therapy in the short-, middle-, and long-term. Also, the longer the journey is to diagnosis, the more people get discouraged and depressed.   [10:02] Part of the unmet need in diagnosis is awareness. There's a saying, “What you don't know, you can't diagnose.” Many physicians don't know about these eosinophilic conditions.   [12:13] APFED and Dr. Roufosse worked together to author “Improving Care in Eosinophil Associated Diseases: A Charter.” The charter outlines the needs and the rights of patients with eosinophil-associated diseases.   [13:03] The rights of patients include the right to a timely diagnosis, which implies awareness about the diseases among the public, healthcare providers, and policy makers. Patients also have the right to access multi disciplinary care teams, as the disease may affect different tissues and organs. A patient may even have several disorders at once.   [14:06] It's important that if treatment options are available; patients need to have access to them. This is not the case in all countries. Patients need rapid access to the therapies once an indication has been decided by a specialist.   [14:53] Quick diagnosis will decrease the accrual of damage due to the disease, inadequate treatment, and overexposure to corticosteroid treatment. From a psychological point of view, it's very reassuring to rapidly feel that a label has been given to the disease and that there's a plan. When there's no label, there's no plan.   [15:47] The key to shortening the diagnostic timeline is awareness at all levels of healthcare education and specialization. General practitioners need to be educated on what it means and what to do when they see a high eosinophil count in blood or tissue. There needs to be access to the tools to diagnose the associated disorders.   [17:00] Patients need easier access to referral centers where they see the experts and access the tools for diagnosis. Multidisciplinary team care is needed when diseases hit different organs.   [17:44] When EGPA is controlled with immunosuppressive therapy, often asthma remains a serious problem and very difficult to manage. You need a pulmonologist to take care of that aspect. You need an ear, nose, and throat doctor for complications in those areas. Cardiovascular complications need a cardiologist.   [19:21] Dr. Roufosse says it is still challenging for patients to access a multidisciplinary care team. Creating a multidisciplinary care team requires resources. It has to be supported by a hospital. The institution needs to be an academic institution with funding, as doctors meeting to discuss a difficult case does not generate income for the institution.   [20:39] Ryan worked with a multi disciplinary care team as a young EoE patient. He traveled every year from his home in Georgia to the multi-disciplinary care team in Denver, Colorado. The fact that his family was able to travel out of state was wonderful. The team was effective and he misses it. Now he has separate appointments for each type of doctor.   [22:32] New therapies, for those who have had access to them through clinical trials, are decreasing the need for corticosteroid therapy in many patients. Practically half of the patients with hypereosinophilic syndrome can be tapered off corticosteroids. Dr. Roufosse tells of one of her first patients, whose life was changed by these therapies.   [24:04] Not every aspect of disease responds as well to these new therapies, revealing new unmet needs that are being tested with additional new therapies. Dr. Roufosse's first patient has been helped greatly with biologics for almost 20 years now.   [24:55] Dr. Roufosse speaks of more unmet treatment needs. Eosinophils are only a part of the picture. EoE is a complex disease about more than eosinophils. We need more understanding of what the key pathogenic events are across the range of eosinophil-related disorders to be able to identify new therapeutic targets.   [26:00] With clinical trials, it can be difficult to find suitable endpoints for the trial and define the efficacy of a new treatment. When is the disease still active with treatment? When can we start decreasing the intensity of treatment? How long do we have to treat with these drugs? Many of these questions are still completely unanswered.   [26:53] Over the past 25 years, the time to diagnosis has decreased. Dr. Roufosse rarely now has a patient referred to her that already has severe, irreversible damage.   [27:21] How to score disease activity is an area where we still have a lot of work to do.   [27:37] Medical codes are used to classify and group diseases for reporting statistical information. In the U.S., they are important for diagnostics and what treatments you get access to. In 2020, new codes (ICD-10) were approved for various subsets of eosinophilic diseases.   [28:09] ICD-10 codes are used less in Belgium than in the U.S. but a disease does not “exist” if it doesn't have a code. Without a code, there is no access to diagnostic tools or reimbursement for therapy for the disease. You need codes to justify hospitalization. C codes also allow Holly's patients to receive feeding therapy.   [30:43] To help patients and caregivers identify medical professionals offering care for eosinophil-associated diseases, APFED hosts a Specialist Finder on its website. It largely has clinicians in the U.S. You can access it at apfed.org/specialists. There is also a badge for specialists who are members of the International Eosinophil Society.   [31:10] Dr. Roufosse suggests having handouts for patients listing patient associations and places to find information on their disease. Some people are more comfortable with something tangible and physical. Not everyone uses Google! Doctors need to use different means to share information on how to access specialists.   [32:11] Policymakers are important in bringing together information to give access to proper care for these disorders.   [33:56] Dr. Roufosse discusses unmet needs in research. We understand so little about these diseases, although great progress has been made in understanding that the eosinophil is a toxic cell that can cause damage and if you target those eosinophils, you are going to prevent some of that damage. We don't yet have the full picture.   [34:32] Some unmet needs are understanding what part of each of these disorders is influenced genetically or combines genetics with environmental triggers. What cells initiate the inflammatory process? What cells and mediators maintain the process? Which mediators should we target? How do we do it without compromising immunity?   [35:12] It appears that targeting eosinophils in humans is innocuous, but what are they for? We are learning about what eosinophils are for in mice, but very little about what they're for in humans. Are normal eosinophils irreplaceable or are there redundant functions with other cells? Some patients have high eosinophils without any illness.   [35:46] Some patients have lower eosinophil counts than others and they have rapidly progressive cardiac damage. What characterizes a bad eosinophil? We don't have the tools to recognize that, yet. We can't predict which patients are going to require more aggressive therapy earlier in their disease course. That's very important to research.   [36:39] Dr. Roufosse recommends using the apfed.org website with its Specialist Finder and relevant patient resources. Awareness is the key to faster diagnosis, accessing treatment, and avoiding harmful treatment.   [37:35] Ryan and Holly thank Dr. Roufosse for being on the podcast. Ryan shares the links including apfed.org, apfed.org/specialists, and apfed.org/eos-connections links. Holly and Ryan thank APFED's education partners, linked below.   Publications discussed: Patient charter: Apfed.org/advocacy/ead-patient-charter/  Link.springer.com/article/10.1007/s12325-022-02110-8 Pubmed.ncbi.nlm.nih.gov/29672914/   Mentioned in This Episode: American Partnership for Eosinophilic Disorders (APFED) APFED on YouTube, Twitter, Facebook, Pinterest, Instagram CUB-Hôpital Erasme, Brussels Episode 18: “Transition of Care from Pediatric to Adult Providers, with Dr. Giresh Hiremath” Episode 15: “Access to Specialty Care for Eosinophilic Esophagitis (EoE) with Dr. Emily McGowan” “Improving Care in Eosinophil-Associated Diseases: A Charter” apfed.org/specialists Real Talk: Eosinophilic Diseases Podcast   Education Partners: This episode of APFED's podcast is brought to you thanks to the support of Bristol Myers Squibb, GlaxoSmithKline, Mead Johnson Nutrition, Sanofi, and Regeneron.   Tweetables:   “The International Eosinophil Society is a dynamic ... society whose main mission is to bring together clinicians, investigators, and researchers ... interested in eosinophils and eosinophilic disorders. ” — Florence Roufosse, MD, PhD   “Transitioning from pediatric to adult care is typically an unmet need in eosinophilic esophagitis, which very commonly begins in childhood.” — Florence Roufosse, MD, PhD    “The unmet need, in … diagnosis, is awareness. … There's a saying that what you don't know, you can't diagnose. … Many physicians don't know about these eosinophilic conditions. … Turn toward someone … who is more likely than you to know.” — Florence Roufosse, MD, PhD     Featured speaker: Florence Roufosse, MD, PhD Professor of Medicine, Internist, and Clinical Immunologist at CUB-Hôpital Erasme, Brussels, President, International Eosinophil Society   Dr. Florence Roufosse is a Professor of Medicine, Internist, and Clinical Immunologist at CUB-Hôpital Erasme, Brussels, and is President of the International Eosinophil Society. She is in charge of a specialized consultation dedicated to diagnosing and treating eosinophil-related conditions, that is integrated in the European Reference Network: EuroBloodNet. She also manages patients with systemic auto-immune and auto-inflammatory conditions.   Besides these clinical activities, Dr. Roufosse leads translational research projects to improve the understanding and treatment of lymphocytic variant hypereosinophilic syndrome (HES) and participates in international research efforts to better delineate disease course and treatment responses of HES. She is involved in the design and conduct of international clinical trials evaluating the efficacy of novel treatment options in patients with HES and eosinophilic granulomatosis with polyangiitis (EGPA), as well as sub-studies that aim to identify biomarkers and/or disease variants predicting treatment responses.

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 Episode 06: “Understanding and Managing Eosinophilic Granulomatosis with Polyangiitis (EGPA) with Dr. Peter Merkel” Peter A. Merkel, MD, MPH Children's Hospital of Philadelphia National Jewish Health-Denver Churg-Strauss Syndrome Mononeuritis multiplex The Spoon Theory EGPA Facebook Group Eosinophilic Disease Group on Facebook The Cleveland Clinic The Vasculitis Foundation @Apfedorg on Instagram Apfed.org/egpa Apfed.org/specialists 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

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Die Eosinophile Granulomatose mit Polyangiitis (EGPA), früher als Churg-Strauss-Syndrom bekannt, gehört zur Gruppe der Gefäßentzündungen, die zu den rheumatischen Erkrankungen zählen. Dauerhusten und Grippesymptome sind häufig. Zum Tag der seltenen Erkrankungen möchten wir auf diese Erkrankung, die harmlos beginnen kann hinweisen, da sie schwerwiegende Komplikationen unabhängig vom Alter mit sich bringen kann. Viel Freude weiterhin mit unseren Podcasts. Euer Dozent Thomas G. Montag --- Send in a voice message: https://podcasters.spotify.com/pod/show/dozent-thomas-g-montag/message

Am 28. Februar ist der „Tag der Seltenen Erkrankungen“. Wer betroffen ist, hat meist einen langen Leidensweg hinter sich. Weil die Erkrankungen so selten sind, werden sie häufig erst spät erkannt und entsprechend gezielt behandelt. Ein Beispiel für eine Seltene Erkrankung gibt in dieser Episode die Lungenfachärztin Dr. Sabine Lampert. Die Eosinophile Granulomatose mit Polyangiitis, kurz EGPA, betrifft in Deutschland jährlich etwa 1.500 Menschen.

Dans cet épisode, je t'explique ce que tu dois faire pour l'orientation en SEGPA. Eduscol : https://eduscol.education.fr/1184/sections-d-enseignement-general-et-professionnel-adapte L'épisode dont j'ai parlé : https://podcasts.apple.com/fr/podcast/cest-quoi-la-segpa-avec-rachid-linstit-maxiprof-et/id1546762449?i=1000565192938

Guest: Jared Nathan Silver, MD, PhD Guest: Praveen Akuthota, MD Eosinophilic granulomatosis with polyangiitis and hypereosinophilic syndromes are often mistaken for each other. How can we better distinguish these diseases? Dr. Jared Silver discusses how to diagnose these diseases with Dr. Praveen Akuthota, a pulmonologist from U.C. San Diego Medical Center in California. This is a non-promotional, non-CME disease state disease education podcast series brought to you by American College of CHEST Physicians in collaboration with and paid for by GSK.

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 Dr. Peter Merkel at Penn Medicine Real Talk: Eosinophilic Diseases “Episode 003: Self-Advocating With an Eosinophil-Disease” Vasculitis Foundation 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

In this episode of ACR on Air we begin the first entry in our Vasculitis miniseries with Dr. Sharon Chung, where we take a detailed examination of the 2021 ACR/VF guidelines for managing systemic vasculitis. In part one of the series Dr. Chung will discuss the importance and creation of the guidelines along with the impact the author's hope to achieve. We then dive into the recommendations for ANCA-associated vasculitis, including: GPA, EGPA and MPA. We'll address controversial questions for treatment and the impacts that arise for COVID-19 vaccinations.

Join Alex & Coop this week as they chat with Ashley Spencer. Ashley is a fellow #vasculitiswarrior battling EGPA. She was Alex's first autoimmune buddy, mentoring and helping her through the journey. Her mentorship and advocacy work has only grown since. After a near-death experience mid-flight, Ashley champioins for vasculitis and allergy awareness. Tune in to hear her story and the amazing silver linings and work she has created due to her diagnosises. As always, #YOUARESUPPORTED. #AUTOCOMMUNITY --- Support this podcast: https://podcasters.spotify.com/pod/show/alexandra-cain/support

In today's episode, I talk with Dr. Mehrdad Maz about the newly published guidelines for giant cell arteritis (GCA).  Dr. Maz is the Division Director of the Kansas University Allergy, Clinical Immunology and Rheumatology Section. He serves on the Steering Core Committee of the ACR-VF Vasculitis Treatment Guidelines.  This project was done in partnership with the Vasculitis Foundation. To review the complete guidelines, visit https://dev.vasculitisfoundation.org/2021-acr-vf-vasculitis-guidelines/ or vasculitisfoundation.org. You can find them on Twitter @vasculitisfound and I am @ebrheum. Thanks for listening! 

In VF's Vasculitis Visionaries' fourteenth episode, Ben and Kaley sit down with Dr. Christian Pagnoux from Toronto's Mount Sinai Hospital. Founder of the Canadian vasculitis research group CanVasc, Dr. Pagnoux discusses ongoing research on disease, treatments, and patient outcomes with a focus on understudied vasculitides such as EGPA. He also highlights the uses of virtual data gathering during the COVID-19 pandemic. Listen in to learn about CanVasc's updated ANCA-associated vasculitis management guidelines and the challenges of recommending medical care across diverse groups and regions.

Go online to PeerView.com/DKK860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. Eosinophilic granulomatosis with polyangiitis (EGPA) is a rare multisystemic disorder that can be fatal if left untreated. EGPA is characterized by moderate-to-severe asthma, peripheral blood eosinophilia, mononeuropathy or polyneuropathy, pulmonary infiltrates, paranasal sinus abnormalities, and extravascular eosinophils or eosinophilic vasculitis. Optimal treatment involves accurate diagnosis of the condition, keeping abreast of novel and emerging therapies, and a multidisciplinary approach. This web broadcast features two experts in EGPA as they aim to give a greater understanding into the recognition, diagnosis, and individualized management of EGPA. The event concludes with a practicum discussion to connect the data with real-life application. Upon completion of this activity, participants should be better able to: Describe the pathophysiology of eosinophilic granulomatosis with polyangiitis (EGPA) and its relationship to novel therapeutic targets, Recognize the importance of a multidisciplinary approach in diagnosing and managing patients with EGPA, Apply evidence-based approaches to diagnose and differentiate EGPA from other eosinophilic disorders, Develop individualized treatment plans for patients with EGPA based on the latest clinical data.

Go online to PeerView.com/DKK860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. Eosinophilic granulomatosis with polyangiitis (EGPA) is a rare multisystemic disorder that can be fatal if left untreated. EGPA is characterized by moderate-to-severe asthma, peripheral blood eosinophilia, mononeuropathy or polyneuropathy, pulmonary infiltrates, paranasal sinus abnormalities, and extravascular eosinophils or eosinophilic vasculitis. Optimal treatment involves accurate diagnosis of the condition, keeping abreast of novel and emerging therapies, and a multidisciplinary approach. This web broadcast features two experts in EGPA as they aim to give a greater understanding into the recognition, diagnosis, and individualized management of EGPA. The event concludes with a practicum discussion to connect the data with real-life application. Upon completion of this activity, participants should be better able to: Describe the pathophysiology of eosinophilic granulomatosis with polyangiitis (EGPA) and its relationship to novel therapeutic targets, Recognize the importance of a multidisciplinary approach in diagnosing and managing patients with EGPA, Apply evidence-based approaches to diagnose and differentiate EGPA from other eosinophilic disorders, Develop individualized treatment plans for patients with EGPA based on the latest clinical data.

Go online to PeerView.com/DKK860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. Eosinophilic granulomatosis with polyangiitis (EGPA) is a rare multisystemic disorder that can be fatal if left untreated. EGPA is characterized by moderate-to-severe asthma, peripheral blood eosinophilia, mononeuropathy or polyneuropathy, pulmonary infiltrates, paranasal sinus abnormalities, and extravascular eosinophils or eosinophilic vasculitis. Optimal treatment involves accurate diagnosis of the condition, keeping abreast of novel and emerging therapies, and a multidisciplinary approach. This web broadcast features two experts in EGPA as they aim to give a greater understanding into the recognition, diagnosis, and individualized management of EGPA. The event concludes with a practicum discussion to connect the data with real-life application. Upon completion of this activity, participants should be better able to: Describe the pathophysiology of eosinophilic granulomatosis with polyangiitis (EGPA) and its relationship to novel therapeutic targets, Recognize the importance of a multidisciplinary approach in diagnosing and managing patients with EGPA, Apply evidence-based approaches to diagnose and differentiate EGPA from other eosinophilic disorders, Develop individualized treatment plans for patients with EGPA based on the latest clinical data.

Go online to PeerView.com/DKK860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. Eosinophilic granulomatosis with polyangiitis (EGPA) is a rare multisystemic disorder that can be fatal if left untreated. EGPA is characterized by moderate-to-severe asthma, peripheral blood eosinophilia, mononeuropathy or polyneuropathy, pulmonary infiltrates, paranasal sinus abnormalities, and extravascular eosinophils or eosinophilic vasculitis. Optimal treatment involves accurate diagnosis of the condition, keeping abreast of novel and emerging therapies, and a multidisciplinary approach. This web broadcast features two experts in EGPA as they aim to give a greater understanding into the recognition, diagnosis, and individualized management of EGPA. The event concludes with a practicum discussion to connect the data with real-life application. Upon completion of this activity, participants should be better able to: Describe the pathophysiology of eosinophilic granulomatosis with polyangiitis (EGPA) and its relationship to novel therapeutic targets, Recognize the importance of a multidisciplinary approach in diagnosing and managing patients with EGPA, Apply evidence-based approaches to diagnose and differentiate EGPA from other eosinophilic disorders, Develop individualized treatment plans for patients with EGPA based on the latest clinical data.

Go online to PeerView.com/DKK860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. Eosinophilic granulomatosis with polyangiitis (EGPA) is a rare multisystemic disorder that can be fatal if left untreated. EGPA is characterized by moderate-to-severe asthma, peripheral blood eosinophilia, mononeuropathy or polyneuropathy, pulmonary infiltrates, paranasal sinus abnormalities, and extravascular eosinophils or eosinophilic vasculitis. Optimal treatment involves accurate diagnosis of the condition, keeping abreast of novel and emerging therapies, and a multidisciplinary approach. This web broadcast features two experts in EGPA as they aim to give a greater understanding into the recognition, diagnosis, and individualized management of EGPA. The event concludes with a practicum discussion to connect the data with real-life application. Upon completion of this activity, participants should be better able to: Describe the pathophysiology of eosinophilic granulomatosis with polyangiitis (EGPA) and its relationship to novel therapeutic targets, Recognize the importance of a multidisciplinary approach in diagnosing and managing patients with EGPA, Apply evidence-based approaches to diagnose and differentiate EGPA from other eosinophilic disorders, Develop individualized treatment plans for patients with EGPA based on the latest clinical data.

Go online to PeerView.com/DKK860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. Eosinophilic granulomatosis with polyangiitis (EGPA) is a rare multisystemic disorder that can be fatal if left untreated. EGPA is characterized by moderate-to-severe asthma, peripheral blood eosinophilia, mononeuropathy or polyneuropathy, pulmonary infiltrates, paranasal sinus abnormalities, and extravascular eosinophils or eosinophilic vasculitis. Optimal treatment involves accurate diagnosis of the condition, keeping abreast of novel and emerging therapies, and a multidisciplinary approach. This web broadcast features two experts in EGPA as they aim to give a greater understanding into the recognition, diagnosis, and individualized management of EGPA. The event concludes with a practicum discussion to connect the data with real-life application. Upon completion of this activity, participants should be better able to: Describe the pathophysiology of eosinophilic granulomatosis with polyangiitis (EGPA) and its relationship to novel therapeutic targets, Recognize the importance of a multidisciplinary approach in diagnosing and managing patients with EGPA, Apply evidence-based approaches to diagnose and differentiate EGPA from other eosinophilic disorders, Develop individualized treatment plans for patients with EGPA based on the latest clinical data.

Go online to PeerView.com/DKK860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. Eosinophilic granulomatosis with polyangiitis (EGPA) is a rare multisystemic disorder that can be fatal if left untreated. EGPA is characterized by moderate-to-severe asthma, peripheral blood eosinophilia, mononeuropathy or polyneuropathy, pulmonary infiltrates, paranasal sinus abnormalities, and extravascular eosinophils or eosinophilic vasculitis. Optimal treatment involves accurate diagnosis of the condition, keeping abreast of novel and emerging therapies, and a multidisciplinary approach. This web broadcast features two experts in EGPA as they aim to give a greater understanding into the recognition, diagnosis, and individualized management of EGPA. The event concludes with a practicum discussion to connect the data with real-life application. Upon completion of this activity, participants should be better able to: Describe the pathophysiology of eosinophilic granulomatosis with polyangiitis (EGPA) and its relationship to novel therapeutic targets, Recognize the importance of a multidisciplinary approach in diagnosing and managing patients with EGPA, Apply evidence-based approaches to diagnose and differentiate EGPA from other eosinophilic disorders, Develop individualized treatment plans for patients with EGPA based on the latest clinical data.

Go online to PeerView.com/DKK860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. Eosinophilic granulomatosis with polyangiitis (EGPA) is a rare multisystemic disorder that can be fatal if left untreated. EGPA is characterized by moderate-to-severe asthma, peripheral blood eosinophilia, mononeuropathy or polyneuropathy, pulmonary infiltrates, paranasal sinus abnormalities, and extravascular eosinophils or eosinophilic vasculitis. Optimal treatment involves accurate diagnosis of the condition, keeping abreast of novel and emerging therapies, and a multidisciplinary approach. This web broadcast features two experts in EGPA as they aim to give a greater understanding into the recognition, diagnosis, and individualized management of EGPA. The event concludes with a practicum discussion to connect the data with real-life application. Upon completion of this activity, participants should be better able to: Describe the pathophysiology of eosinophilic granulomatosis with polyangiitis (EGPA) and its relationship to novel therapeutic targets, Recognize the importance of a multidisciplinary approach in diagnosing and managing patients with EGPA, Apply evidence-based approaches to diagnose and differentiate EGPA from other eosinophilic disorders, Develop individualized treatment plans for patients with EGPA based on the latest clinical data.

Go online to PeerView.com/DKK860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. Eosinophilic granulomatosis with polyangiitis (EGPA) is a rare multisystemic disorder that can be fatal if left untreated. EGPA is characterized by moderate-to-severe asthma, peripheral blood eosinophilia, mononeuropathy or polyneuropathy, pulmonary infiltrates, paranasal sinus abnormalities, and extravascular eosinophils or eosinophilic vasculitis. Optimal treatment involves accurate diagnosis of the condition, keeping abreast of novel and emerging therapies, and a multidisciplinary approach. This web broadcast features two experts in EGPA as they aim to give a greater understanding into the recognition, diagnosis, and individualized management of EGPA. The event concludes with a practicum discussion to connect the data with real-life application. Upon completion of this activity, participants should be better able to: Describe the pathophysiology of eosinophilic granulomatosis with polyangiitis (EGPA) and its relationship to novel therapeutic targets, Recognize the importance of a multidisciplinary approach in diagnosing and managing patients with EGPA, Apply evidence-based approaches to diagnose and differentiate EGPA from other eosinophilic disorders, Develop individualized treatment plans for patients with EGPA based on the latest clinical data.

Go online to PeerView.com/DKK860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. Eosinophilic granulomatosis with polyangiitis (EGPA) is a rare multisystemic disorder that can be fatal if left untreated. EGPA is characterized by moderate-to-severe asthma, peripheral blood eosinophilia, mononeuropathy or polyneuropathy, pulmonary infiltrates, paranasal sinus abnormalities, and extravascular eosinophils or eosinophilic vasculitis. Optimal treatment involves accurate diagnosis of the condition, keeping abreast of novel and emerging therapies, and a multidisciplinary approach. This web broadcast features two experts in EGPA as they aim to give a greater understanding into the recognition, diagnosis, and individualized management of EGPA. The event concludes with a practicum discussion to connect the data with real-life application. Upon completion of this activity, participants should be better able to: Describe the pathophysiology of eosinophilic granulomatosis with polyangiitis (EGPA) and its relationship to novel therapeutic targets, Recognize the importance of a multidisciplinary approach in diagnosing and managing patients with EGPA, Apply evidence-based approaches to diagnose and differentiate EGPA from other eosinophilic disorders, Develop individualized treatment plans for patients with EGPA based on the latest clinical data.

Go online to PeerView.com/SGN860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, an eosinophilic granulomatosis with polyangiitis (EGPA) expert offers expert insight to help physicians achieve a greater understanding into the recognition, diagnosis, and management of EGPA, including the latest clinical evidence with respect to novel and emerging therapies. Upon completion of this activity, participants should be better able to: Review the pathophysiology of EGPA and its correlation to the discovery of novel therapeutic targets, Use evidence-based criteria to diagnose and differentiate EGPA from other eosinophilic disorders, Select therapies for patients with EGPA based on the latest clinical data as part of an individualized treatment plan, Discuss the importance of the multidisciplinary team in the management of patients with EGPA

Go online to PeerView.com/SGN860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, an eosinophilic granulomatosis with polyangiitis (EGPA) expert offers expert insight to help physicians achieve a greater understanding into the recognition, diagnosis, and management of EGPA, including the latest clinical evidence with respect to novel and emerging therapies. Upon completion of this activity, participants should be better able to: Review the pathophysiology of EGPA and its correlation to the discovery of novel therapeutic targets, Use evidence-based criteria to diagnose and differentiate EGPA from other eosinophilic disorders, Select therapies for patients with EGPA based on the latest clinical data as part of an individualized treatment plan, Discuss the importance of the multidisciplinary team in the management of patients with EGPA

Go online to PeerView.com/SGN860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, an eosinophilic granulomatosis with polyangiitis (EGPA) expert offers expert insight to help physicians achieve a greater understanding into the recognition, diagnosis, and management of EGPA, including the latest clinical evidence with respect to novel and emerging therapies. Upon completion of this activity, participants should be better able to: Review the pathophysiology of EGPA and its correlation to the discovery of novel therapeutic targets, Use evidence-based criteria to diagnose and differentiate EGPA from other eosinophilic disorders, Select therapies for patients with EGPA based on the latest clinical data as part of an individualized treatment plan, Discuss the importance of the multidisciplinary team in the management of patients with EGPA

Go online to PeerView.com/SGN860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, an eosinophilic granulomatosis with polyangiitis (EGPA) expert offers expert insight to help physicians achieve a greater understanding into the recognition, diagnosis, and management of EGPA, including the latest clinical evidence with respect to novel and emerging therapies. Upon completion of this activity, participants should be better able to: Review the pathophysiology of EGPA and its correlation to the discovery of novel therapeutic targets, Use evidence-based criteria to diagnose and differentiate EGPA from other eosinophilic disorders, Select therapies for patients with EGPA based on the latest clinical data as part of an individualized treatment plan, Discuss the importance of the multidisciplinary team in the management of patients with EGPA

Go online to PeerView.com/SGN860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, an eosinophilic granulomatosis with polyangiitis (EGPA) expert offers expert insight to help physicians achieve a greater understanding into the recognition, diagnosis, and management of EGPA, including the latest clinical evidence with respect to novel and emerging therapies. Upon completion of this activity, participants should be better able to: Review the pathophysiology of EGPA and its correlation to the discovery of novel therapeutic targets, Use evidence-based criteria to diagnose and differentiate EGPA from other eosinophilic disorders, Select therapies for patients with EGPA based on the latest clinical data as part of an individualized treatment plan, Discuss the importance of the multidisciplinary team in the management of patients with EGPA

Go online to PeerView.com/SGN860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, an eosinophilic granulomatosis with polyangiitis (EGPA) expert offers expert insight to help physicians achieve a greater understanding into the recognition, diagnosis, and management of EGPA, including the latest clinical evidence with respect to novel and emerging therapies. Upon completion of this activity, participants should be better able to: Review the pathophysiology of EGPA and its correlation to the discovery of novel therapeutic targets, Use evidence-based criteria to diagnose and differentiate EGPA from other eosinophilic disorders, Select therapies for patients with EGPA based on the latest clinical data as part of an individualized treatment plan, Discuss the importance of the multidisciplinary team in the management of patients with EGPA

Go online to PeerView.com/SGN860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, an eosinophilic granulomatosis with polyangiitis (EGPA) expert offers expert insight to help physicians achieve a greater understanding into the recognition, diagnosis, and management of EGPA, including the latest clinical evidence with respect to novel and emerging therapies. Upon completion of this activity, participants should be better able to: Review the pathophysiology of EGPA and its correlation to the discovery of novel therapeutic targets, Use evidence-based criteria to diagnose and differentiate EGPA from other eosinophilic disorders, Select therapies for patients with EGPA based on the latest clinical data as part of an individualized treatment plan, Discuss the importance of the multidisciplinary team in the management of patients with EGPA

Go online to PeerView.com/SGN860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, an eosinophilic granulomatosis with polyangiitis (EGPA) expert offers expert insight to help physicians achieve a greater understanding into the recognition, diagnosis, and management of EGPA, including the latest clinical evidence with respect to novel and emerging therapies. Upon completion of this activity, participants should be better able to: Review the pathophysiology of EGPA and its correlation to the discovery of novel therapeutic targets, Use evidence-based criteria to diagnose and differentiate EGPA from other eosinophilic disorders, Select therapies for patients with EGPA based on the latest clinical data as part of an individualized treatment plan, Discuss the importance of the multidisciplinary team in the management of patients with EGPA

In this episode of The Ride, we're chatting about a common manifestation of EGPA Vasculitis: neuropathy. This can be extremely life-altering, but with a little bit of moxie and the right support, you can figure out how to get around. Our guest, is Kate, a fellow EGPA chica, who will be discussing how she likes to move it. --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app --- Send in a voice message: https://anchor.fm/Vasculitis-Journey/message

Go online to PeerView.com/ZJH860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, experts in eosinophilic granulomatosis with polyangiitis (EGPA) discuss the pathophysiology and diagnosis of EGPA, as well as strategies for treatment and the impact on patient quality of life. A patient also joins the discussion to provide unique perspectives on living with EGPA and interacting with healthcare providers. Upon completion of this activity, participants should be better able to: Discuss the pathophysiology of eosinophilic granulomatosis with polyangiitis (EGPA) and its relevance to novel therapeutic targets, Employ evidence-based approaches to diagnose and differentiate EGPA from other eosinophilic disorders, Apply the latest clinical data to the individualized treatment of patients with EGPA, Explain the importance of a multidisciplinary approach in the management of patients with EGPA

Go online to PeerView.com/ZJH860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, experts in eosinophilic granulomatosis with polyangiitis (EGPA) discuss the pathophysiology and diagnosis of EGPA, as well as strategies for treatment and the impact on patient quality of life. A patient also joins the discussion to provide unique perspectives on living with EGPA and interacting with healthcare providers. Upon completion of this activity, participants should be better able to: Discuss the pathophysiology of eosinophilic granulomatosis with polyangiitis (EGPA) and its relevance to novel therapeutic targets, Employ evidence-based approaches to diagnose and differentiate EGPA from other eosinophilic disorders, Apply the latest clinical data to the individualized treatment of patients with EGPA, Explain the importance of a multidisciplinary approach in the management of patients with EGPA

Go online to PeerView.com/ZJH860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, experts in eosinophilic granulomatosis with polyangiitis (EGPA) discuss the pathophysiology and diagnosis of EGPA, as well as strategies for treatment and the impact on patient quality of life. A patient also joins the discussion to provide unique perspectives on living with EGPA and interacting with healthcare providers. Upon completion of this activity, participants should be better able to: Discuss the pathophysiology of eosinophilic granulomatosis with polyangiitis (EGPA) and its relevance to novel therapeutic targets, Employ evidence-based approaches to diagnose and differentiate EGPA from other eosinophilic disorders, Apply the latest clinical data to the individualized treatment of patients with EGPA, Explain the importance of a multidisciplinary approach in the management of patients with EGPA

Go online to PeerView.com/ZJH860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, experts in eosinophilic granulomatosis with polyangiitis (EGPA) discuss the pathophysiology and diagnosis of EGPA, as well as strategies for treatment and the impact on patient quality of life. A patient also joins the discussion to provide unique perspectives on living with EGPA and interacting with healthcare providers. Upon completion of this activity, participants should be better able to: Discuss the pathophysiology of eosinophilic granulomatosis with polyangiitis (EGPA) and its relevance to novel therapeutic targets, Employ evidence-based approaches to diagnose and differentiate EGPA from other eosinophilic disorders, Apply the latest clinical data to the individualized treatment of patients with EGPA, Explain the importance of a multidisciplinary approach in the management of patients with EGPA

Go online to PeerView.com/ZJH860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, experts in eosinophilic granulomatosis with polyangiitis (EGPA) discuss the pathophysiology and diagnosis of EGPA, as well as strategies for treatment and the impact on patient quality of life. A patient also joins the discussion to provide unique perspectives on living with EGPA and interacting with healthcare providers. Upon completion of this activity, participants should be better able to: Discuss the pathophysiology of eosinophilic granulomatosis with polyangiitis (EGPA) and its relevance to novel therapeutic targets, Employ evidence-based approaches to diagnose and differentiate EGPA from other eosinophilic disorders, Apply the latest clinical data to the individualized treatment of patients with EGPA, Explain the importance of a multidisciplinary approach in the management of patients with EGPA

Go online to PeerView.com/ZJH860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, experts in eosinophilic granulomatosis with polyangiitis (EGPA) discuss the pathophysiology and diagnosis of EGPA, as well as strategies for treatment and the impact on patient quality of life. A patient also joins the discussion to provide unique perspectives on living with EGPA and interacting with healthcare providers. Upon completion of this activity, participants should be better able to: Discuss the pathophysiology of eosinophilic granulomatosis with polyangiitis (EGPA) and its relevance to novel therapeutic targets, Employ evidence-based approaches to diagnose and differentiate EGPA from other eosinophilic disorders, Apply the latest clinical data to the individualized treatment of patients with EGPA, Explain the importance of a multidisciplinary approach in the management of patients with EGPA

This week we'll discuss a recent trial on mepolizumab - and IL-5 inhibitor - for eosinophilic granulomatosis with polyangiitits.  Find the paper here and be sure to follow us on twitter @JBRheum!