Podcasts about Vasculitis

Dr. Justin Abbatemarco talks with Drs. Sumanth Reddy and Jeffrey Gelfand about the complexities of small vessel predominant primary CNS vasculitis, clinical features, and the impact of early intensive immunosuppressive therapy on remission.  Read the related article in Neurology® Neuroimmunology & Neuroinflammation.  Disclosures can be found at Neurology.org. 

Vasculitis is a rare condition that constricts blood vessels and can lead to loss of function or degeneration of certain parts of the body.In the case of Jayne Hardman, the disorder took her nose, but as she puts it, she now has several to choose from.Jayne Hardman is Patient Advocate for Vasculitis UK and joins Seán to discuss.

Vasculitis is a rare condition that constricts blood vessels and can lead to loss of function or degeneration of certain parts of the body.In the case of Jayne Hardman, the disorder took her nose, but as she puts it, she now has several to choose from.Jayne Hardman is Patient Advocate for Vasculitis UK and joins Seán to discuss.

In this pod, Roz Benson talks to consultant nurse Sarah Hardy and vasculitis expert Dr Shirish Dubey. This wide ranging discussion about vasculitis covers everything from diagnostic tips and approach to management, to the practicalities of a kidney biopsy and cyclophosphamide counselling.Thanks for listening to Talking Rheumatology! Join the conversation on X using #TalkingRheum or tweet us @RheumatologyUK.BSR is the UK's leading specialist medical society for rheumatology and MSK health professionals. To discover how we can support you in delivering the best care for your patients, visit our website.

In this episode, we explore the importance of patient involvement in shaping rare condition research initiatives. Our guests discuss why it's crucial to involve individuals with lived experiences, including patients and caregivers, in setting research agendas. In doing so, this approach ensures research can be more inclusive, efficient, and impactful, addressing the issues that matter most to those affected. Mel Dixon, Founder Cure DHDDS and member of Genomics England Participant Panel is joined by Jo Balfour, Founder of CamRARE and Dr Rona Smith, Senior Research Associate at the University of Cambridge and Honorary Consultant in Nephrology and Vasculitis. Find out more about the Cambridge Rare Disease Research Network, discussed in the episode, which aims to support the rare condition community in building an online network of partnerships and resources to facilitate new patient-centred research opportunities. "We're really turning research on its head, moving away from it being a researcher-led activity where they decide on the idea and the research concept and bring patients in at different points along that research journey and instead starting with the patient's idea in the first place.  It can only be a better system for all because it improves efficiency, it improves potentially the long term outputs and, most importantly, outcomes for patients." You can download the transcript or read it below. Mel: Welcome to Behind the Genes. Rona: I think it really means that we measure what matters to patients and individuals that are affected.  Often, it's really difficult to capture kind of the real impact of disease and there's a tendency for researchers to measure things that are easy to measure and are reproducible, which of course is important but what's most important is actually being able to truly capture the impact of an intervention on an individual's condition.  So, I think that's another key aspect of having people with lived experience involved right from the start. Mel: My name is Mel Dixon and I'm a member of the Participant Panel at Genomics England and founder of Cure DHDDS, a charity set up to raise awareness, support families and help drive research into the ultra-rare DHDDS gene variant.  On today's episode I'm joined by Jo Balfour, Managing Director of CamRARE, which is the Cambridge Rare Disease Network.  This network unites patients, advocates, experts and leaders to address the challenges faced by people affected by rare conditions.  I'm also joined by Rona Smith, Associate Professor at the University of Cambridge and honorary consultant in nephrology and vasculitis.  Today we'll be discussing the role of patients in setting research agendas and how their involvement can lead to more impactful and patient-centred research.  If you enjoy today's episode we'd love your support.  Please like, share and rate us on wherever you listen to your podcasts. Before we begin the interview I'd like to share a little bit of my story.  In November 2022, following whole genome sequencing, we received the news that two of our three children carried a neurodevelopmental and neurodegenerative DHDDS genetic variant.  At the time of our children's diagnosis there was very little information on our gene, minimal research happening into it and no treatment pathway.  Through our charity, Cure DHDDS, we have worked tirelessly to instigate research and create a collaborative scientific research community.  I am a huge advocate for patient-led research and have witnessed first-hand the positive impact it can have on patient lives.  Thanks to the work of the many scientists that we have had the honour of collaborating with, within two years of our children's diagnosis we have a disease-modifying therapy in our sight and an ASO (Antisense oligonucleotides) therapy in development.  We are incredibly grateful for the opportunities genetic testing has given us but I also appreciate how overwhelming a genetic diagnosis can be and how challenging it can be for families to initiate research projects with little to no resources, and that's why initiatives such as CamRARE that we'll be discussing today are so important.   On that note, let's get back to our podcast guests.  I wonder before we dive into today's topic if you could both give a brief introduction, and, Rona, if you could also give the less scientifically-minded of us an explanation about what nephrology is. Rona: Thank you for inviting me today.  So I'm Rona Smith, I work in Cambridge and I'm a nephrologist and that means somebody that looks after individuals who have diseases that affect their kidneys.  My specialist interest is in something called vasculitis which is a rare autoimmune disease that affects all organs in the body but kidneys as well.  Mel: Thank you.  And Jo?  Jo: Hi Mel.  I'm Jo Balfour, the Managing Director and one of the founding members of Cambridge Rare Disease Network, or CamRARE for short.  I think we're often described as the ‘Chief Everything Officers'.  I manage the charity and all of our operations and our wonderful team.    Mel: Lovely.  Thank you very much.  Rona, I wonder also if you could explain to our listeners what is a research agenda?  Rona: So in brief a research agenda is really a strategy that outlines key questions or topics that a research community, and that might be investigators, clinicians, scientists, patients, industry,  and they are the priorities that they want to explore and address over a period of time.  So it's really a direction of travel and identification of areas of importance and where there are gaps in knowledge so that it then leads to the opportunity to form specific research questions that you can then go on and address.  Mel: Why do you both think it's important to involve patients in setting these research agendas?  Jo: Well I think critically one of the things that I've learnt over my time working, not just in the rare disease sector but also earlier in social care and education, is that we should as professionals never assume anything; you know, we have not lived in their shoes and we don't know what the daily life of people living with rare conditions is like.  So gathering that day to day lived experience is really crucial.  And I have a unique opportunity to see into that daily life with our local community of rare disease families who have a range of different rare conditions.  I'm party to their conversations, to their daily trials and tribulations, the things that are difficult, the things that they find joy in but I still will always go back to them and ask their opinion.  I see myself as a spokesperson for them as we're an umbrella organisation but I certainly never really know what it's like to live with their conditions.  I think they bring with them diverse experiences which we really need and value in setting research priorities, they have unique knowledge of their own conditions.  They ethically have a right to be involved from the start and to set that priority and agenda but, equally, it's valuable for us as researchers because if we can involve people early we have definitely more chance of good engagement and later success, better outcomes for everyone.  Mel: Couldn't agree more.  And, Rona, is there anything you'd like to add to that? Rona: I think it really means that we measure what matters to patients and individuals that are affected.  Often it's really difficult to capture kind of the real impact of disease and there's a tendency for researchers to measure things that are easy to measure and are reproducible, which of course is important but what's most important is actually being able to truly capture the impact of an intervention on an individual's condition.  So I think that's another key aspect of having people with lived experience involved right from the start.  Jo: Another thing that's actually quite interesting that I'm going to mention here is that I think when you live day in, day out with a condition your perception of things like pain is different from your average person's so you become almost accepting of your daily norm, and I think that's really critical to understand as well.  And it's only by getting to really know patients and understand. When we say, “What's your pain like on a scale of 1 to 10?” you know, something that I feel as pain because I get it rarely I probably am going to put it at a higher score than somebody who has that every day.  So I think there's subtleties and nuances like that as well which are really critical to get across by conversation with patients.  Mel: That makes absolute sense.  And I see that from the patient perspective myself.  I was out with my friends the other day and they said, “Oh my goodness, you're constantly taking your children to sports activities.”  Because of their physical needs we're constantly,  they go to Pilates, they go to swimming, they go to gym class – we try to keep them fit and healthy – and we, even though they're older, have to take them there and back and that's become our norm but when you're speaking to families whose children don't have those difficulties they have no idea how much time that actually takes up.  And I had no idea how much like time it takes up compared to what other people are doing because that is our norm, that's what we've accepted as the norm.  Patients and patient groups are incredibly driven and invested in their rare disease as well so they make really good rare disease research partners.     And, moving on, what do you see as the challenges and barriers to patient involvement and how do we overcome these? Rona: I think probably the biggest barrier is time.  So, the most important thing is investing time to build relationships, to really understand in-depth perspectives both from the patient's side but also the researcher's side. And, inevitably, we always want to do things faster and actually this is one really, really critical aspect is investing time.  Funding is also a challenge.  Often you have to do a lot of upstream work before you have got funding for a project and that takes time from individuals and that's another challenge.  And I think the third thing for me is individuals that are patient partners in research, they're not just patients, they're people - they have lives, they have work, they have families, they have everything else that goes on in life - and so actually fitting this all in is really challenging.  Mel: Jo, is there anything you'd like to add there?  Jo: Yeah, I think just a word about diversity really and, you know, how do we uncover those hidden families and patients who currently don't really have a voice.  I think we'd all acknowledge that there are key voices within the rare disease community who will share the views of their community and they've become well-oiled machines almost at being great advocates but, as I mentioned earlier, even though I'm perhaps one of those people, you know, I speak for a community, I would never assume anything.  So, I still need to uncover the thoughts and the feelings and the emotions and the needs and the what matters from those people, and, as Rona mentioned, that takes time and it takes building relationships and trust with people.  So, we have a wonderful community in the Eastern region of England which is made up of families affected by all different rare diseases, and undiagnosed.  And some are babies and have been lucky enough to get a very early diagnosis and others are young adults but what we're finding through that is that experience is diverse and experience changes over time as families go through transition periods or they meet a roadblock and they're having to navigate things differently.  So, it's about building those relationships.  That takes times, it takes resources, it takes sometimes a reset in the way that we think things need to be done.  So instead of asking questions all the time and putting surveys out and trying to get response that way it takes a bit of thinking about how do we listen better and how do we give those people who don't have a voice, who are non-verbal or perhaps have a learning disability, how do we ensure that we're capturing their views as well.    And we did a really lovely project actually last year, it was something funded by the NHS called My Story, My Way, where we actually spent three months with our young adults working out what it was they wanted from our community next, how did they want us to follow them into adulthood.  And we knew that there were a number of young people in that group who were non-verbal and had some learning differences and we knew that we couldn't just do it in the normal format, we couldn't just do a focus group and ask their opinion, so we actually did it through photography.  So each of the familiess well, the young person themself was given a simple camera.  They basically had thirty-six shots.  You got thirty-six clicks to capture the things, the people, the places that you love and then to share them with us as a community.  And then we all discuss, you know, how these things might be something we can build into our future plans for them.  And it was such a wonderful activity.  We gave them plenty of time, plenty of opportunities to ask questions.  If the young person themself couldn't physically click the camera their sibling got to help them.  And their sibling or their parent was given another camera in black and white so we had distinctive pictures, pictures that the kid themself had taken, pictures that the family had taken, but all together, you know, it gave this lovely kind of medley, this beautiful visual representations of what mattered to them.  And I think it's about taking the time to be creative with people like that and really get to the bottom of “How do we find out what matters to you?” Mel: Although it takes time to think about those ideas.  That could be translatable across the board really, couldn't it, throughout various conditions.  I think that's fantastic.  Rona, I wonder if you can tell us how has the work that's already been done through the patient-led research hub facilitated addressing research priorities.  Rona: So just a tiny bit about the patient-led research hub.  So, this has been now running for nearly ten years through Cambridge.  It's a partnership between the Cambridge Biomedical Research Campus and we're based within the university and the Trust.  And in essence it kind of was set up because of really a mismatch between what many patients wanted from research and what investigators' views were.  And so really the premise is that we welcome patients to come to us with an idea, a problem, an unmet need in their disease area – and we do focus on rare disease – and we work with them to see “Well actually what do we already know about that?” and then if there is a gap in knowledge we then move to kind of trying to work and develop a question that we can then address.  And that might be a question that's addressed through generating more information through surveys or it may actually be a question of an intervention that we can test.  So, we've had lots of projects come through and we, just an example of a project was from a group of patients with a rare kidney condition called autosomal dominant polycystic kidney disease, and that is a condition where over time you accumulate cysts in your kidneys and the kidneys become large, they become very painful and eventually they can fail.  And a question that the patient group had was about whether drinking more water could impact the rate of growth of these cysts, and there's a strong hypothesis behind that that drinking lots of water reduces down the level of a particular hormone.  And we actually worked with the charity behind this group, the Polycystic Kidney Disease Charity, and designed a study to test a very high water intake to a normal water intake to see whether it was possible over a period of eight weeks for patients to actually stick to this.  It's quite difficult to do.  And they recorded how much water they'd drunk, they tested their own urine and actually it showed that this was feasible to do this kind of work.  So, I think the patient-led research hub is kind of taking the research priorities that are important to patients but working in a patient-led way to come right through to a project.  Mel: That sounds great.  And if the patients are engaged from the start of the project and it's led by them they're obviously going to be much more driven to take part in the actual research and see the research through themselves.    So, Jo, I'm very excited to hear about the launch of the Rare Disease Research Network.  Can you please tell me what the research network is and what you hope to achieve with it?  Jo: So the Rare Disease Research Network is first of all a bit of a mouthful so we're going to try and encourage people to call it the RDRN.  It's a co-created project which really the patient-led research hub in Cambridge approached us about in 2022, I think, we started talking about this, approached CamRARE as a partner to apply for an NIHR partnership grant, and we were successful with that to really take the model that the patient-led research hub had already developed and found was successful, and perhaps too successful for its own good – they were receiving more applications and more ideas than they could manage – and to develop that into an online platform.  So taking the same model, making it more accessible to a wider group of people, potentially worldwide, and providing the hand-holding that the patient-led research hub has always done, helping patients really consider their question, formulate that into a research idea, then do the literature search to find out “Is this question already answered, and if it is, great, can we provide that information to our community?  If it's not, how do we then build a team?  Who needs to be in my research team?  How do we then get funding together to take this idea forward?”  So, it's really taking the model, taking the good practice that already existed and creating an online platform to really attempt to replicate that as best we can. So the platform will launch on 23rd November (2024) at CamRARE's Rarefest which is a lovely in-person activity that's going on in Cambridge, and that platform will be open to anyone who has an interest in rare disease research.  But I think, critically, what's different about this is that, you know, we've talked about setting research agendas and we've talked about patients contributing to that, contributing to setting the priorities, what's different here is that the patients decide on the questions; it's what matters to the patients coming from them and their community.  And it's an opportunity for them to showcase those questions and those idea on a platform and almost to have a call to action, “Is there anyone else on this platform who has similar research interests to me?”  The platform will matchmake them together through a series of choosing tags, choosing tags about particular disease areas -  It's linked to the Orphanet database - choosing tags about the type of research that you're interested in.  That matchmaking process will happen, which at the moment is a very serendipitous process but we hope to take it a little bit further on from that.  It's still going to be a little bit of potluck who's on the platform at the time who's got similar interests as you but hopefully it will improve that serendipitous system.  And it will allow them to access resources on the platform, which is the kind of hand-holding bit, and also, critically, some mentoring.  So, there's a real sort of opportunity here for professionals – researchers, industry partners, healthcare professionals – who have particular skills in research to be able to say, “Well I can help.  I might not be able to be part of your team at this point but if you need half an hour on a Zoom call with me to think about your research question I can offer to mentor you on that.”  But, likewise, I think there's going to be lovely opportunities here for patient groups to support each other too because what we've always realised is that patient groups are at different points of their research journey.  You know, we see some organisations that are really well-funded now who are in partnership with industry, you know, they have a group of pharma companies that are supporting the development of treatments and they've kind of reached that point where they're very highly skilled and very well experienced.  And then there's others who are mum and dad who've just had a recent diagnosis for their child, they've gone searching on the internet, they can't find information, they don't have a patient organisation to rely on so they're going to make one themselves.  This happens all the time in the rare disease field.  There are 11,000 different rare conditions and there's not a group for all of them so mum and dad will often start something themselves and then in lots of cases want to do some research, they want to answer some of these questions.  So, you know, they're really starting from a very different beginning stage here where they've going to need some help, and sometimes the best help comes from their peers, it comes from other patient groups.  So that's in a nutshell what it's about; it's about providing opportunity for patient groups to showcase their great ideas, build partnerships and take research forward.   Rona: The only thing just to add there is I think, although rare diseases are individually rare, collectively, as Jo said, they're quite common, there's 11,000 rare diseases, and often, although they all have distinct features, there are common threads through rare diseases in terms of maybe symptoms that patients experience or challenges that their rare disease brings.  So, for example, you may have symptoms of pain or seizures that are common across many conditions, there may be educational needs that are threads going through.   And groups could work together maybe to answer a question that's relevant to a number of conditions and so bringing people together for that.  Or there may be another group that's already tried to answer that question in their condition and you can learn what worked, what didn't work.  I think that's the other thing, is there will be common threads that come through, and I think that would be a real strength of the network to draw those people together. Jo: I think as well, Mel, if we take this back to what we said right at the outset about optimising success for patients by bringing them into the conversation early, I think this platform provides the perfect opportunity to do that.  So we're moving away from, we're really turning research on its head, moving away from it being a researcher-led activity where they decide on the idea and the research concept and bring patients in at different points along that research journey and instead starting with the patient's idea in the first place.  It can only be a better system for all because it improves efficiency, it improves potentially the long-term outputs and, most importantly, outcomes for patients.  Mel: We were that family, that mum and dad setting up the charity a year and a half ago for the ultra-rare disease that our children had.  I think, you know, the match-making opportunities that are here are fantastic because finding yourself in that position is incredibly isolating.  And not only the matchmaking opportunities with the researchers but, as you were saying, Rona, as well with similar diseases; there's so much to learn from other diseases that may have, I don't know, a similar phenotype in the cells or similar symptoms.  That's what we found from connecting with these other rare conditions.  So, for us it's lysosomal storage diseases, we've now got the opportunity potentially to piggyback on drugs better used for their diseases for our own ultra rare condition, you know, where for us to run a full-on clinical trial by ourselves with a new drug, I mean, we just wouldn't have,  there's no funding, there's not enough interest.  So, I think the opportunities that lie in this network are really, really exciting.  Jo, can you tell me a bit more about who can join the research network?  Jo: So anyone with a rare disease research interest. That's everybody from individuals affected themselves, their family members, their caregivers, the patient organisations, that support them, and then, you know, all sorts of rare disease professional researchers.  So, we're looking for PhD students who are looking for their first exciting project to undertake, have they taken a look at the Rare Disease Research Network to see if there's any ideas that might pique their interest.  We're looking for established researchers, medical professionals who are undertaking clinical research but also I think, importantly, companies.   You know, we hear more and more about concepts like drug repurposing for rare diseases where we're looking at the opportunities for taking drugs that already exist and have been proven safe to be redeployed to other rare diseases. It's quicker, it's more efficient, it's cheaper, so does it open up opportunities for companies that are using that technique to get involved.  And also pharma companies.  This platform is not all going to be about finding cures and treatments but it certainly will be a priority for some groups.  So we really are welcoming everyone with an interest in rare disease research to get involved, be part of the network, collaborate, help where you can. Rona: And also, as we've said before, once you've got that level of engagement and the patients leading these initiatives we've found, certainly with our group, the patients are much more willing to, say, find the MRI scans for the scientists, to have a blood sample done, to have skin fibroblasts taken.  If they know and they understand and they're driven and, as you said, the research idea has come from them as a patient group it certainly increases the chance of them being fully involved in the project from the start to the finish.  And all these things are imperative to understanding rare conditions because without researchers having the opportunity to look at these various samples you're not going to stand much of a chance of finding a treatment.  Jo: And we want the opportunity to upskill patients as well.  I think there are many people out there with great ideas who haven't yet found the confidence to promote those ideas because they're not quite sure of what the research journey looks like or what it might entail or whether they've got the right skills.  But I think by joining the platform and almost kind of watching how other people are managing these things and utilising the resources and the mentoring I do really hope that will build that confidence and those skills sets in people so that they can engage.  Rona: Yeah, just to add to that, I don't think it's just upskilling patients and patient groups, I think it's upskilling everybody involved in rare disease research.  This is quite a different way of approaching research, it's something that maybe academics may feel a little bit uncomfortable with, it's not how it's normally done, so I think there's a whole learning process.  And the aim is that this RDR network will evolve and will develop and the direction it goes will be driven by the community that are engaging with it.  So I think it's a really exciting time just as we're coming up to launch to see where this goes.  Jo: Mel, you've been involved in this project, it would be really interesting actually to hear from you. I was just thinking, as part of the co-creation community we had 25 individuals from the rare disease community who built this platform from scratch with us; Rona and I might have set out all the vision for how we wanted the platform to be or what we thought might be a good idea but ultimately it was the community who decided and they literally have fact-checked and cross-referenced every word that's gone on the platform. What has that experience been like for you as a patient representative?  Mel: I think it's been really welcome to see a network that is truly putting patients at the centre of everything.  So, from the very beginning foundations you have the rare disease community involved which is exactly what you're trying to create through your network.  So, I think it's been very welcome to be involved in the project and I also think that hopefully it will sort of be self-perpetuating that this will start to press a reset button on how we think about rare conditions and how it needs to be a more equitable field with patients.  Because I think, as you've both alluded to, while some clinicians and researchers are very onboard with this, for others it's a new concept that they still need to potentially adjust to or get their head round because it is a different way of thinking.  But in rare disease, well, in any condition really but particularly rare disease because there's so few experiences to draw on, I think that patients are vital to moving forward and to making that change so that diseases and conditions that have previously had no treatment, like, hopefully this way of thinking can expedite those treatments because, well, as a rare disease representative myself for our community that's one of our biggest drivers.  We're dealing with a condition that's progressive that affects most of our community's children; that is what we want, we want treatment, we want something that can stabilise the conditions.  You know, you can have researchers doing random projects that would make no difference to the final outcome of patients but if researchers know it's a priority of this particular group, hopefully that can channel in their focus and get the outcomes that the patients want in a more timely collaborative way.  So, I am a huge advocate for what you're doing, I think it's an incredible initiative.  Is there anything either of you would like to add to that? Rona: Rare disease disproportionately affects children and young people.  So, 7 out of 10 rare diseases develop in childhood and at the moment the Rare Disease Research Network hasn't really got a forum for including children and young people, and really that's partly because, and Jo can speak much more eloquently to this with her experience.  Actually, we didn't do that at the start because we feel that this is actually a discreet piece of work that really needs to be done in collaboration with children and young people to make sure that it's done well so that they can engage in the platform. So, Jo, I don't know if you want to talk about how we're hoping to take this forward.  Jo: Yeah, so we're busy developing a project plan at the moment which we're hoping to get funding for to work over eighteen months with a team of young adults with rare conditions, probably from our Unique Feet community and keep it local because we already have a good relationship with them and they have our trust.  But the idea would be to work with lots of other young people's forums.  So there's already ones established in and around our area, such as Pedal, which works with really small children, and there's also groups that are set up for young people with cancer.  So we've already had lots of great conversations with them about how we can work with them, how they can help us sense-check our project, and then in return we can help them better understand research and their ability to be involved in that.  But ultimately by the end we want to run focus groups, we want to develop some peer mentors within our community, so young adults who've, you know, perhaps come out the other end of a period of transition into adulthood who can support other young people with rare diseases to also become researchers, to come up with their own ideas and their own questions, and to sense-check projects that come through the platform.  So it's a really exciting opportunity to truly involve the people who are affected most by rare conditions but we know through our My Story, My Way project that this has to be done gently, carefully, given time and done really thoughtfully.  So that's our next step and we hope to be able to share those learnings with people so that it can be done elsewhere.  Mel: And do you see the network also working with children with learning differences? Jo: Absolutely.  We'll invest a lot of time and energy in ensuring that materials are accessible, inclusive and suitable for the community that we're working with.  Mel: So looking to the future, how do you think, Rona, can patient-led research help to shape the future landscape?  Rona: So I think, Jo used the term earlier, kind of this is really turning research on its head, so it's really putting patients right at the centre of research, so it just makes sure that it's absolutely driven by what matters to them to get the outcomes that matter.  And, again, it's just got all that benefit of efficiency and really answering those questions that matter.  Mel: And, Jo, do you think this could lead to more collaborative partnership, for example, between industry and academia, potentially leading to quicker clinical advancement? Jo: I would absolutely like to think so.  You know, as CamRARE we run a companies forum which is a roundtable meeting for pharma and biotech companies and other organisations like Genomics England who are involved in the rare disease therapeutic space and diagnostics, and I think one thing that I find really heart-warming about those meetings is that, you know, different companies are able to sit around a table as competitors but with a very open mind to addressing the barriers and the bottlenecks that prevent them from getting drugs to patients.  Because of course it's not just the research journey that's a challenge, it's the regulatory side of things at the end of that journey; just because you've created a great drug it doesn't matter in the end if it doesn't get to the patient.  So, you know, access is critical and involving patients at the earliest possible moment to ensure that that treatment gets through to the regulators and gets access to patients is the only way forward.  We had a recent companies forum meeting where we were exploring health-related patient reported outcome measures, or PROMs, and we had a speaker from NICE who's the regulatory body, we had a speaker from Sheffield University who was talking as an academic about developing PROMs for industry and for patient groups and we had Emily Reuben, the CEO of Duchenne UK, and we had an amazing discussion about the importance of involving the patient community from the outset.  And the academic explained that developing a PROM for Duchenne UK had taken them two years and it had taken them that length of time because they'd followed this careful thoughtful pathway of making sure that they didn't assume anything about what matters to patients.  But that of course, as we said earlier, involves time, it involves financial commitment, it involves resources and the right attitude, but I do think that a platform like the Rare Disease Research Network can really try to harness all of those things by bringing the right people together – industry, academia and patients – to work together equitably. Mel: And with the network do you think you'll be getting the regulators in at that initial stage as well so that, like you said, the patients can gain access while we're dealing with their priorities, the regulators are informed at the very earliest stages so that we know the process that's being followed will ultimately lead to patients gaining access to the relevant therapies?  Jo: Yes, I think this is really important, and there's actually, we've got a section on the new platform which really talks to each of the different stakeholders.  ‘What's in this for me?'  ‘Why is it important for you to be here and to join?'  And one part of that is funders and that includes the regulatory bodies.  And at the next companies forum meeting we're actually going to be bringing the Rare Disease Research Network Platform and its potential to the companies forum meeting and we'll have regulators involved in that.  So, you know, we are constantly talking to people about why it's important for them all to be involved and all to see what matters. I think I'd like to advocate for an extra letter at the end of PPIEP - if we could squeeze a D in there at the end too.  So over time that terminology has expanded to be Public Patient Involvement Engagement and Participation, which was added I think this year, but it would be lovely to have the D on the end and to include ‘Driven' because I think what's really important about this platform is that it's not just engagement and involvement, it's not just participation, it's initiated by and driven by patients. Mel: So I think we'll wrap here.  Thank you to our guests, Jo Balfour and Dr Rona Smith, for joining me today as we discuss the role of patients in setting research agendas.  If you'd like to hear more like this, please subscribe to Behind the Genes on your favourite podcast app.  Thank you for listening.  I've been your host, Mel Dixon, and this podcast was edited by Bill Griffin at Ventoux Digital and produced by Naimah Callachand. 

In the final part of this three-part series, Dr. Justin Abbatemarco and Dr. Ahmad Nehme discuss how to differentiate between CAA-RI and PACNS. Show reference: https://www.neurology.org/doi/abs/10.1212/WNL.0000000000209548 

(Actualidad Médica 31) Recomendaciones para el manejo de arteritis de células gigantes y de Takayasu - Parte 2Continuamos hoy con las recomendaciones de manejo del colegio americano de reumatología y la vasculitis foundation para arteritis de células gigantes y arteritis de Takayasu. En este podcast nos centraremos en el manejo de la arteritis de células gigantes, es fundamental que tengamos en cuenta las definiciones revisadas en podcast previo, así que si no lo han escuchado les recomiendo hacerlo antes.ENLACE AL ARTÍCULO https://bit.ly/actualidadmédica30Te invitamos a que participes en la sección de comentarios.¿Qué quieres escuchar? ¿Cuáles son tus temas de interés?Síguenos en www.reumatimes.com, donde podrás encontrar cubrimientos de congresos de reumatología y resúmenes de actualidad en la especialidad. Encuéntranos en YouTube como ReumaTimes Y Facebook como Reumatologia.Online o ReumaTimes, en Instagram como dr.sebastianherrera o ReumaTimes, y en X (antes Twitter) como @Reuma_Online_ o @ReumaTimes. Estamos también en TikTok como @Reuma_Times.Síguenos en www.reumatimes.comTambién puedes encontrarnos en: Twitter: https://twitter.com/Reuma_Online_ Facebook: https://www.facebook.com/reumatologiaonline/ Instagram: https://www.instagram.com/dr.sebastianherrera/ Spreaker: https://www.spreaker.com/user/11390404 Spotify: https://spoti.fi/3DILwLP

In part two of this three-part series, Dr. Justin Abbatemarco and Dr. Ahmad Nehme discuss the underlying pathophysiology and how to diagnose primary angiitis of the CNS in clinical practice. Show reference: https://www.neurology.org/doi/abs/10.1212/WNL.0000000000209548 

In part one of this three-part series, Dr. Justin Abbatemarco and Dr. Ahmad Nehme discuss how cerebral amyloid angiopathy and CAA-RI present in clinical practice and how to make a diagnosis. Show reference: https://www.neurology.org/doi/abs/10.1212/WNL.0000000000209548 

Michael Putman, MD, MSci and Zachary Wallace, MD, MSc discuss a personalized approach to managing the treatment of patients with ANCA-associated vasculitis, including the role of ANCA type and titers and their impact on flare risk and treatment decisions.

(Actualidad Médica 30) Buen día, hoy otro podcast de Actualidad Médica.   Hoy vamos a explorar dos enfermedades reumatológicas complejas que afectan los vasos sanguíneos: la arteritis de células gigantes (ACG) y la arteritis de Takayasu (AT). Estas enfermedades, aunque poco comunes, pueden tener un impacto significativo en la vida de quienes las padecen.ENLACE: https://bit.ly/actualidadmédica30Te invitamos a que participes en la sección de comentarios.¿Qué quieres escuchar? ¿Cuáles son tus temas de interés?Síguenos en www.reumatimes.com, donde podrás encontrar cubrimientos de congresos de reumatología y resúmenes de actualidad en la especialidad. Encuéntranos en YouTube como ReumaTimes Y Facebook como Reumatologia.Online o ReumaTimes, en Instagram como dr.sebastianherrera o ReumaTimes, y en X (antes Twitter) como @Reuma_Online_ o @ReumaTimes. Estamos también en TikTok como @Reuma_Times.Síguenos en www.reumatimes.comTambién puedes encontrarnos en: Twitter: https://twitter.com/Reuma_Online_ Facebook: https://www.facebook.com/reumatologiaonline/ Instagram: https://www.instagram.com/dr.sebastianherrera/ Spreaker: https://www.spreaker.com/user/11390404 Spotify: https://spoti.fi/3DILwLP

Dr. Justin Abbatemarco talks with Dr. Ahmad Nehme about the complexities of diagnosing and differentiating between Cerebral amyloid angiopathy-related inflammation and biopsy-positive primary angiitis of the central nervous system. Read the related article in Neurology. Disclosures can be found at Neurology.org.

Drs. Zachary Wallace and Michael Putman continue their induction therapy discussion in patients with ANCA-associated vasculitis, reviewing the use of glucocorticoids, avacopan, and plasma exchange.

(Actualidad Médica 28 - Parte 2) Recomendaciones 2021 para el manejo de vasculitis ANCA del colegio americano de reumatología y la vasculitis foundation PARTE 2Hoy completaremos la revisión de las recomendaciones de manejo 2021 para vasculitis ANCA del colegio americano de reumatología y la vasculitis foundation, nos queda por revisar la sección de Granulomatosis eosinofílica con vasculitis.ENLACE AL ARTÍCULO: ENLACE: https://bit.ly/actualidadmédica28Te invitamos a que participes en la sección de comentarios.¿Qué quieres escuchar? ¿Cuáles son tus temas de interés?Síguenos en www.reumatimes.com, donde podrás encontrar cubrimientos de congresos de reumatología y resúmenes de actualidad en la especialidad. Encuéntranos en YouTube como ReumaTimes Y Facebook como Reumatologia.Online o ReumaTimes, en Instagram como dr.sebastianherrera o ReumaTimes, y en X (antes Twitter) como @Reuma_Online_ o @ReumaTimes. Estamos también en TikTok como @Reuma_Times.Síguenos en www.reumatimes.comTambién puedes encontrarnos en: Twitter: https://twitter.com/Reuma_Online_ Facebook: https://www.facebook.com/reumatologiaonline/ Instagram: https://www.instagram.com/dr.sebastianherrera/ Spreaker: https://www.spreaker.com/user/11390404 Spotify: https://spoti.fi/3DILwLP

Michael Putman, MD, MSci and Zachary Wallace, MD, MSc review induction chemotherapy in patients with ANCA-associated vasculitis, focusing on the use of cyclophosphamide and rituximab.

Anisha B. Dua, MD, MPH and Duvuru Geetha, MD discuss evolving strategies in maintenance therapy for ANCA-associated vasculitis. In keeping with the goal of achieving sustained remission and minimizing relapse, they provide insight into the duration and dosing of maintenance therapy, as well as treatment options and monitoring.

Anisha B. Dua, MD, MPH and Duvuru Geetha, MD share their insights into the nuances of steroid reduction and steroid-sparing approaches in ANCA-associated vasculitis treatment protocols, including the clinical benefits of steroid reduction, options available, and which patients might be the best candidates for steroid reduction.

(Actualidad Médica 28 - Parte 1) Las vasculitis asociadas a ANCA incluyen la granulomatosis con poliangeitis, la poliangeitis microscópica y la granulomatosis eosinofílica con poliangeitis. Estas afectan vasos de pequeño y mediano tamaño y se caracterizan por compromiso de órganos multisistémico. Las estrategias de tratamiento actuales han mejorado de forma sustancial el pronóstico de estas enfermedades. Desafortunadamente, los tratamientos disponibles se pueden asociar a eventos adversos. Se hacen necesarias recomendaciones de manejo.ENLACE AL ARTÍCULO: ENLACE: https://bit.ly/actualidadmédica28Te invitamos a que participes en la sección de comentarios.¿Qué quieres escuchar? ¿Cuáles son tus temas de interés?Síguenos en www.reumatimes.com, donde podrás encontrar cubrimientos de congresos de reumatología y resúmenes de actualidad en la especialidad. Encuéntranos en YouTube como ReumaTimes Y Facebook como Reumatologia.Online o ReumaTimes, en Instagram como dr.sebastianherrera o ReumaTimes, y en X (antes Twitter) como @Reuma_Online_ o @ReumaTimes. Estamos también en TikTok como @Reuma_Times.Síguenos en www.reumatimes.comTambién puedes encontrarnos en: Twitter: https://twitter.com/Reuma_Online_ Facebook: https://www.facebook.com/reumatologiaonline/ Instagram: https://www.instagram.com/dr.sebastianherrera/ Spreaker: https://www.spreaker.com/user/11390404 Spotify: https://spoti.fi/3DILwLP

When should we choose rituximab over cyclophosphamide? What role can avacopan play as an adjunct therapy? When is plasma exchange a viable option? How can we effectively navigate steroid tapering? These are just a few of the critical questions we'll explore with our next guest, Dr. Tanaz Kermani, founder and director of the Vasculitis Program at UCLA, a dedicated clinician and active researcher. Join us as we delve into these topics and address the challenges of diagnosing and managing patients with vasculitis. 

Drs. Dua and Geetha share their insights into the renal manifestations of ANCA-associated vasculitis, detailing how kidney function is affected. They also delve into the recent guideline updates on the diagnosis and management of ANCA-associated vasculitis.

Este 17, 18, 19 y 20 de noviembre de 2024 estaremos publicando los resúmenes de cubrimiento del congreso del colegio americano de reumatología (ACR Convergence) 2024.Te invitamos a que visites www.reumatimes.com, te inscribas gratis y revises el contenido que día a día estarán revisando nuestros expertos para que de una forma práctica y concisa estés al día en la reumatología.Te invitamos a que participes en la sección de comentarios. ¿Qué quieres escuchar? ¿Cuáles son tus temas de interés?Síguenos en www.reumatimes.com, donde podrás encontrar cubrimientos de congresos de reumatología y resúmenes de actualidad en la especialidad.Encuéntranos en YouTube como ReumaTimes Y Facebook como Reumatologia.Online o ReumaTimes, en Instagram como dr.sebastianherrera o ReumaTimes, y en X (antes Twitter) como @Reuma_Online_ o @ReumaTimes. Estamos también en TikTok como @Reuma_Times.Síguenos en www.reumatimes.comTambién puedes encontrarnos en:Twitter: https://twitter.com/Reuma_Online_Facebook: https://www.facebook.com/reumatologiaonline/Instagram: https://www.instagram.com/dr.sebastianherrera/Spreaker: https://www.spreaker.com/user/11390404Spotify: https://spoti.fi/3DILwLP

In this episode, Jonathan is joined by John H. Stone, Professor of Medicine at Harvard Medical School and The Edward A. Fox Chair in Medicine at Massachusetts General Hospital.  Stone discusses his groundbreaking work in systemic vasculitis, including granulomatosis with polyangiitis and ANCA-associated vasculitis. He also shares insights into the emerging field of IgG4-related disease and the exciting possibility of the first approved therapy for this condition. Alongside, he delves into his efforts to minimise glucocorticoid toxicity and his work through the IgG4ward! Foundation.   Timestamps: (00:30) – Introduction (04:00) – Stone's journey into rheumatology (07:28) – WEGET trial (10:30) – Developments in IgG4-related disease and the path to therapy approval (15:52) – Key advancements in the treatment of granulomatosis with polyangiitis (18:04) – Glucocorticoid toxicity and the Glucocorticoid Toxicity Index (GTI) (20:34) – The IgG4ward! Foundation (23:48) – Two Pearls and a Myth (26:45) – Stone's three wishes for rheumatology

Elena also shares her favorite resources for living well with arthritis, including supportive footwear brands, arthritis gadgets, and inspirational books. Shes hares practical tips like finding the right shoes to support your joints, using dictation tools to reduce hand strain, and the importance of accepting that some pain may persist while still being able to live a fulfilling life. Throughout the conversation, Dr Elena and Cheryl emphasize the value of prioritizing what's important and showing up for family, work, and health—even when symptoms make things challenging. If you're newly diagnosed with RA, this episode offers comforting, actionable advice and a reminder that you're not alone in navigating this journey.DISCLAIMER FOR THIS EPISODE:The views expressed are those of the author and do not reflect the official policy or position of the US Air Force, Department of Defense or the US Government*Episode Themes:Personal Challenges and Advice: Elena shares her experience with managing rheumatoid arthritis and vasculitis and discusses practical tips for newly diagnosed individuals.Useful Products and Tools: Cheryl and Elena discuss favorite footwear brands and how they impact daily comfort and highlight dictation software as a game-changer for writing tasks.Living Well with Rheumatoid Arthritis: Elena emphasizes focusing on doing what's most important, even with some discomfort, to achieve a fulfilling life.Inspirational Mantras: Elena shares her favorite motivational sayings and discusses how this perspective helps her manage daily challenges.Medical disclaimer: All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Let's learn about Vasculitis! Vasculitis means inflammation of the vessel, and diagnosis of this condition involves clinical exam, antibody testing, and biopsies.This video is a replay from Dr. Amigues educational channel, Rheumatology 101!  Subscribe to this channel for a new livestream topic each week, Tuesday at 11AM MT.In this conversation, Dr. Amigues emphasizes the importance of early diagnosis and treatment, explaining the different types of vasculitis, their symptoms, and the critical role of rheumatologists in managing these conditions. Dr. Amigues also outlines the diagnostic process and treatment options available for patients with GPA, highlighting the significance of monitoring kidney function and the use of immunosuppressive therapies._____________________________________________________________________________________Join the community and follow UnabridgedMD on social media!Instagram: @unabridgedmdFacebook: @UnabridgedMDTiktok: @unabridgedmdIf you live in Colorado and are looking for a rheumatologist to help you achieve disease remission, email or contact us at UnabridgedMD.com. We are the first direct care rheumatology in Colorado and can see you within a week!Click here to get in touch: https://www.unabridgedmd.comOr give us a call: 303-731-4006

Dr. Mendel is a scientist at the Research Institute of the McGill University Health Centre. She is also an Assistant Professor in the Department of Medicine, Faculty of Medicine and Health Sciences, McGill University and a Rheumatologist at the MUHC. Her research focuses on patient safety in systemic autoimmune rheumatic diseases, with an aim to improve medication safety. She was the first author on the CanVasc consensus recommendations for the management of ANCA vasculitis 2020 update.

Dr. Witkin from the American Society of Retina Specialists talks about our current knowledge of the incidence of retinal vasculitis following intravitreal injection of Pegcetacoplan for treatment of geographic atrophy. Discussed article: Witkin AJ, Jaffe GJ, Srivastava SK, Davis JL, Kim JE. Retinal Vasculitis After Intravitreal Pegcetacoplan: Report From the ASRS Research and Safety in Therapeutics (ReST) Committee. J Vitreoretin Dis. 2023 Dec 21;8(1):9-20. doi: 10.1177/24741264231220224. Erratum in: J Vitreoretin Dis. 2024 Feb 29;8(3):363. doi: 10.1177/24741264241238212. PMID: 38223782; PMCID: PMC10786078.

Dr. Mendel is a scientist at the Research Institute of the McGill University Health Centre. She is also an Assistant Professor in the Department of Medicine at McGill University and a Rheumatologist at the MUHC. She was the first author on the CanVasc consensus recommendations for the management of ANCA vasculitis 2020 update.

Traemos la ReumaGuardia con el cubrimiento de las publicaciones más relevantes de la reumatología en mayo de 2024.Te invitamos a que participes en la sección de comentarios.¿Qué quieres escuchar? ¿Cuáles son tus temas de interés?Síguenos en www.reumatimes.com, donde podrás encontrar cubrimientos de congresos de reumatología y resúmenes de actualidad en la especialidad.Encuéntranos en YouTube Y Facebook como Reumatologia.Online o ReumaTimes, en Instagram como dr.sebastianherrera o ReumaTimes, y en X (antes Twitter) como @Reuma_Online_ o @ReumaTimes. Estamos también en tiktok como @Reuma_Times.  Los esperamos con información concisa y de utilidad en un próximo podcast

Traemos la ReumaGuardia con el cubrimiento de las publicaciones más relevantes de la reumatología en mayo de 2024.Te invitamos a que participes en la sección de comentarios.¿Qué quieres escuchar? ¿Cuáles son tus temas de interés?Síguenos en www.reumatimes.com, donde podrás encontrar cubrimientos de congresos de reumatología y resúmenes de actualidad en la especialidad.Encuéntranos en YouTube Y Facebook como Reumatologia.Online o ReumaTimes, en Instagram como dr.sebastianherrera o ReumaTimes, y en X (antes Twitter) como @Reuma_Online_ o @ReumaTimes. Estamos también en tiktok como @Reuma_Times.  Los esperamos con información concisa y de utilidad en un próximo podcast

Traemos la ReumaGuardia con el cubrimiento de las publicaciones más relevantes de la reumatología en mayo de 2024.Te invitamos a que participes en la sección de comentarios.¿Qué quieres escuchar? ¿Cuáles son tus temas de interés?Síguenos en www.reumatimes.com, donde podrás encontrar cubrimientos de congresos de reumatología y resúmenes de actualidad en la especialidad.Encuéntranos en YouTube Y Facebook como Reumatologia.Online o ReumaTimes, en Instagram como dr.sebastianherrera o ReumaTimes, y en X (antes Twitter) como @Reuma_Online_ o @ReumaTimes. Estamos también en tiktok como @Reuma_Times.  Los esperamos con información concisa y de utilidad en un próximo podcast

(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

(Actualidad Médica 26) Los criterios de clasificación ACR de 1990 para panarteritis nodosa no realizaban la distinción de poliangeítis microscópica y poliarteritis nodosa. La publicación del consenso de Chapel Hill en 1994 buscaba estandarizar la nomenclatura de las vasculitis y consideraban un probable uso de diferentes nombres para una misma enfermedad y un mismo nombre para diferentes enfermedades, identificando esto como una oportunidad de mejora. Por este motivo realizaron la distinción entre poliangeítis microscópica y poliarteritis nodosa, en donde la poliangeítis microscópica es una vasculitis pauci inmune en arteriolas, vénulas o capilares, con capacidad de comprometer medianos vasos. Y la poliarteritis nodosa se restringe a una enfermedad de vasos medianos.ENLACE: https://bit.ly/3Ve9iLT

Este 13, 14, 15 y 16 de junio de 2024 estaremos publicando los resúmenes del cubrimiento del congreso europeo de reumatología (EULAR) 2024 en www.reumatimes. com.Inscríbete gratis para enterarte de los últimos avances de la especialidad, y así estar al día en la reumatología.Te invitamos a que participes en la sección de comentarios. ¿Qué quieres escuchar? ¿Cuáles son tus temas de interés?Síguenos en www.reumatimes.com, donde podrás encontrar cubrimientos de congresos de reumatología y resúmenes de actualidad en la especialidad.Encuéntranos en YouTube como ReumaTimes Y Facebook como Reumatologia.Online o ReumaTimes, en Instagram como dr.sebastianherrera o ReumaTimes, y en X (antes Twitter) como @Reuma_Online_ o @ReumaTimes. Estamos también en TikTok como @Reuma_Times.Síguenos en www.reumatimes.com También puedes encontrarnos en:Twitter: https://twitter.com/Reuma_Online_ Facebook: https://www.facebook.com/reumatologiaonline/ Instagram: https://www.instagram.com/dr.sebastianherrera/ Spreaker: https://www.spreaker.com/user/11390404 Spotify: https://spoti.fi/3DILwLP

Thanks for listening!

This week, Dr. Hausmann takes on Ultrasound in Rheumatology, exploring its use in the field and diagnosing diseases such as Inflammatory Arthritis, Crystaline Arthropathy and Vasculitis. Dr. Minna Kohler, Founder and Director of the Musculoskeletal Ultrasound Program at Massachusetts General Hospital, joins us as our guest. Dr. Kohler discusses how Ultrasound can help therapeutically, what it's like working in an MSK Ultrasound clinic, plus how one can become trained in the use of Ultrasound, what the patient experience is like, the controversies surrounding the use of Ultrasound in rheumatology and what the future holds for it in our field. 

Starting a private practice and the Direct Care model with Dr. Stephen Lewellis - Juvenile gangrenous vasculitis of the scrotum - Midline lesions and when to image - Dermasphere clip show: Episodes 121-130! Find Stephen Lewellis on the web! - https://retinoids.lewellismd.com/posts - https://lewellismd.com/podcast/ Luke's urticaria CME event: https://aaaai.gathered.com/invitation?ref=4openn7e7A Michelle's prurigo nodularis CME event: https://horizoncme.gathered.com/invitation?ref=GELe3oAe69 Want to donate to the cause? Do so here! http://www.uofuhealth.org/dermasphere Check out our video content on YouTube: https://www.youtube.com/@dermaspherepodcast and VuMedi!: https://www.vumedi.com/channel/dermasphere/ The University of Utah's Dermatology ECHO: ⁠https://physicians.utah.edu/echo/dermatology-primarycare - ⁠ Connect with us! - Web: ⁠https://dermaspherepodcast.com/⁠ - Twitter: @DermaspherePC - Instagram: dermaspherepodcast - Facebook: https://www.facebook.com/DermaspherePodcast/ - Check out Luke and Michelle's other podcast, SkinCast! ⁠https://healthcare.utah.edu/dermatology/skincast/⁠ Luke and Michelle report no significant conflicts of interest… BUT check out our friends at: - ⁠Kikoxp.com ⁠(a social platform for doctors to share knowledge) - ⁠https://www.levelex.com/games/top-derm⁠ (A free dermatology game to learn more dermatology!)

This episode digs into the pathophysiology of urticaria vasculitis from anti-C1q to the story of bradykinin. ·       Intro 0:11 ·       In this episode 0:22 ·       Review of episode 83 1:23 ·       Listen to previous episode, The Complement System for Dunces 4:09 ·       Anti-C1q antibodies 6:26 ·       Lupus, anti-C1q and lupus nephritis 9:33 ·       What happens when you inject anti-C1q in a mouse? 12:56 ·       The allergy component: anti-C1q, urticaria and angioedema 17:36 ·       Bradykinin-mediated angioedema and C1q deficiency 24:20 ·       What is the kinin kallikrein system? 26:21 ·       French researchers in 1909: human urine injected in dogs 27:30 ·       How is this relevant to urticarial vasculitis? 31:08 ·       SERPING1 gene mutation 31:23 ·       Summary 32:06 ·       COPD association with urticarial vasculitis 33:51 ·       Coming up in episode 85 35:28 ·       Thanks for listening 35:45 Disclosures: Brown reports no relevant financial disclosures. We'd love to hear from you! Send your comments/questions to Dr. Brown at rheuminationspodcast@healio.com. Follow us on Twitter @HRheuminations @AdamJBrownMD @HealioRheum. References: Busse P, et al. J Allergy Clin Immunol Pract. 2022;doi:10.1016/j.jaip.2021.11.011. Davis MDP, et al. J Allergy Clin Immunol Pract. 2018;doi:10.1016/j.jaip.2018.05.006. Dorn JM, et al. Ann Allergy Asthma Immunol. 2023;doi:10.1016/j.anai.2023.06.014. Marzano AV, et al. J Allergy Clin Immunol. 2022;doi:10.1016/j.jaci.2022.02.007. Siegert CE, et al. Clin Immunol Immunopathol. 1993;doi:10.1006/clin.1993.1066. Stojan G, et al. Lupus. 2016;doi:10.1177/0961203316645205. Venzor J, et al. Clin Rev Allergy Immunol. 2002;doi:10.1385/CRIAI:23:2:201. Wisnieski JJ, et al. Medicine. 1995;doi:10.1097/00005792-199501000-00003.

Join us for session highlights from RheumNow Live 2024. This webinar will feature highlights from these lectures followed by live audience Q & A: Vasculitis & Pregnancy Catherine Sims, MD GPA Management in 2024 Anisha Dua, MD, MPH Treat to Target in Vasculitis Philip Seo, MD

Thank you for listening to this episode of "Health and Fitness" from the Nezpod Studios! Enjoy your night or the start of your day, spiced by our top-notch health and fitness/wellness updates coined from the best sources around the globe: made only for your utmost enjoyment and enlightenment… Click on subscribe to get more spicy episodes for free! See you again soon on the next episode of Health and Fitness Updates! Learn more about your ad choices. Visit megaphone.fm/adchoices

We discuss the occurrence of retinal vasculitis following pegcetcoplan therapy of geographic atrophy with Dr. Andrew Witkin of the New England Eye Center, Tufts University School of Medicine

Is it an allergy or an autoimmune vasculitis, or a little of both? Find out the story of urticarial vasculitis, how this disease was recognized and eventually sorted out from other types of urticaria. ·       Intro 0:12 ·       In this episode 0:21 ·       Case study 1:22 ·       Chronic spontaneous urticaria, hives and nettles 7:57 ·       Dermatographism and witchcraft? 10:15 ·       Causes of urticaria 11:17 ·       Theory of inflammation and histamines 11:40 ·       Urticaria and treatments with histamines 12:09 ·       Types of urticaria 13:02 ·       Mayo Clinic study 13:39 ·       Chronic urticaria as a manifestation of necrotizing venulitis 16:10 ·       Connection between types of urticaria and leukocytoclastic vasculitis 20:02 ·       More case studies 20:38 ·       What do we know about treatments? 22:23 ·       In conclusion 24:15 ·       Coming up in part two 25:08 ·       Thanks for listening 25:47 Disclosures: Brown reports no relevant financial disclosures. We'd love to hear from you! Send your comments/questions to Dr. Brown at rheuminationspodcast@healio.com. Follow us on Twitter @HRheuminations @AdamJBrownMD @HealioRheum. References: Czarnetzki BM. Int J Dermatol. 1989;doi:10.1111/j.1365-4362.1989.tb01314.x. Kolkhir P, et al. J Allergy Clin Immunol. 2019;doi:10.1016/j.jaci.2018.09.007. McDuffie FC, et al. Mayo Clin Proc. 1973;48(5):340-8. Natbony SF, et al. J Allergy Clin Immunol. 1983;doi:10.1016/0091-6749(83)90096-9. Soter NA. N Engl J Med. 1977;doi:10.1056/NEJM197706232962505.

AABP Executive Director Dr. Fred Gingrich is joined by Dr. Lee Jones, technical services veterinarian with Boehringer-Ingelheim. Dr. Jones was previously an extension veterinarian at the University of Georgia and the attending veterinarian for this clinical case report published in The Bovine Practitioner, Volume 57, Number 2. Hairy vetch (Vicia villosa) is a forage, and intoxication from the plant has been described in the literature, although this is a very unusual case. This case affected one animal in the herd, a 5-year-old Angus bull. The bull presented with generalized alopecia, thickened pleated skin and profuse malodorous watery diarrhea. This bull, along with 6 other beef bulls, had been grazing in a pasture containing hairy vetch for 5-6 months. Jones described the diagnostic samples that were taken to evaluate the bull and rule out other causes of systemic granulomatous disease and vasculitis. The bull was euthanized due to poor prognosis and deteriorating clinical condition. Necropsy revealed a disseminated systemic granulomatous disease with variable numbers of multinucleated giant cells and eosinophils was observed in multiple organs indicative of systemic granulomatous disease, along with vasculitis in the kidney, liver and adrenal gland, indicative that vasculitis is involved in the pathogenesis of the lesions. None of the other animals were removed from the pasture and they did not develop clinical signs. Jones indicates that practitioners should consider a full diagnostic work-up on these unusual cases which can include punch biopsies of the skin which revealed the vasculitis and granulomatous lesions. Ilha, M. R., Hawkins, I. K., & Jones, A. L. (2023). Case report: Systemic granulomatous disease with vasculitis in a bull due to hairy vetch (Vicia villosa) toxicosis. The Bovine Practitioner, 57(2), 60–66. https://doi.org/10.21423/bovine-vol27no2p60-66 Washburn, K., Norman, T., Osterstock, J., & Respondek, T. (2007). Hairy vetch (Vicia villosa) toxicosis in a purebred Angus herd. The Bovine Practitioner, 41(1), 60–64. https://doi.org/10.21423/bovine-vol41no1p60-64  

Hear Jen's incredible story of healing from psoriasis, vasculitis, chronic infections and more with a Carnivore Diet, all while coming off of her medications! For anyone struggling with any of these major medical issues, this is a very inspirational episode to watch! Enjoy! Connect with Jen: @delightedtomeatyou on Instagram, YouTube, and TikTok.  Her website is delightedtomeatyou.com and email is drjen@delightedtomeatyou.com She is available for 1 on 1 coaching at the above details.   Contact and Follow Dr Chaffee: ✅PATREON for early releases, bonus content, and weekly Zoom meetings https://www.patreon.com/AnthonyChaffeeMD ✅Sign up for our 30-day carnivore challenge and group here! https://www.howtocarnivore.com/ ✅INSTAGRAM: @anthonychaffeemd www.instagram.com/anthonychaffeemd/ ✅TWITTER: @Anthony_Chaffee ✅TIKTOK: @AnthonyChaffeeMD ✅Apple Podcast: The Plant Free MD https://podcasts.apple.com/au/podcast/the-plant-free-md-podcast/id1614546790 ✅Spotify: The Plant Free MD https://open.spotify.com/show/0WQtoPLuPMWWm3ZT3DYXzp?si=PPc2rXZzQXuzjIRK__SEZQ ✅To Sign up for a personal consultation with me, you can use my Calendly link below to schedule an appointment: ✅60 minute consultation https://calendly.com/anthonychaffeemd/60-minute-consultation ✅For collaborations, please email me at the below address. Please understand that I cannot give advice over email, but only in a consultation setting: AnthonyChaffee@gmail.com For more of my interviews and discussions, as well as other resources, go to my Linktree at: ✅ https://linktr.ee/DrChaffeeMD OR my website at: ✅ www.TheCarnivoreLife.com   Sponsors and Affiliates: ✅ Brand Ambassador for Spearhead Tallow and Soaps https://www.spearheadsoaps.com/?ref=gx0gql8b Discount Code "CHAFFEE" for 10% off ✅ Carnivore t-shirts from the Plant Free MD  www.plantfreetees.com ✅THE CARNIVORE BAR: Discount Code "Anthony" for 10% off all orders!   https://the-carnivore-bar.myshopify.com/?sca_ref=1743809.v3IrTuyDIi ✅Barbell Foods Biltong and Meat Sticks Use code AC10 for 10% of all orders! www.barbellfoods.com.au ✅Schwank Grill (Natural Gas or Propane) https://glnk.io/503n/anthonychaffeemd $150 OFF with Discount Code: ANTHONYMD ✅Butcher Crowd Meat Deliveries https://home.butchercrowd.com.au/?via=anthony Code CARNIVORE20 for $20 off your first purchase ✅ iRestore Laser Hair Therapy: $400 off with discount code AnthonyChaffee https://glnk.io/wyrl/anthonychaffee ✅X3 bar system with discount code "DRCHAFFEE" https://www.kqzyfj.com/click-100676052-13511487 ✅Cerule Stem cells https://DrChaffee.cerule.com ✅CARNIVORE CRISPS: Discount Code "DRCHAFFEEMD" for 10% off all orders! www.carnivorecrisps.com ✅Shop Amazon https://www.amazon.com/shop/anthonychaffeemd?ref=ac_inf_hm_vp   And please like and subscribe to my podcast here and Apple/Google podcasts, as well as my YouTube Channel to get updates on all new content, and please consider giving a 5-star rating as it really helps!   This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard or delay in obtaining medical advice for any medical condition they may have and should seek the assistance of their health care professionals for any such conditions.  

Having both gout and arthritis can be a painful experience, and it's common for individuals to feel helpless, thinking that doing nothing is the only solution. In this episode, Dr. Arinola Dada, board-certified in Internal Medicine, Rheumatology, and Clinical Densitometry, shares her profession and background with us. She dig into how weight impacts joint problems like arthritis, covering topics such as osteoarthritis and gout, the common joints affected by these conditions, triggers for gout attacks (such as certain foods), strategies for improving symptoms (including an anti-inflammatory diet), and the importance of exercise and strengthening for managing arthritis pain. One of her pieces of advice is to start exercising slowly and gradually increase the intensity. She also suggests incorporating low-impact exercises like swimming or using the stairmaster. Don't let pain dictate your life—explore strategies for improvement, from anti-inflammatory diets to gradual exercise. Tune in to the episode and start your journey to a healthier, pain-free lifestyle!   Episode Highlights: Dr. Dada's background How does our weight affect our joint problems Differences between osteoarthritis and gout How to distinguish between osteoarthritis and gout based on the affected joints and the intensity of pain Strategies people should use to be more healthy and improve their symptoms Engaging in low-impact exercises Effectiveness of supplements in treating arthritis Advice for somebody who have osteoarthritis or gout Importance of talking to a doctor for guidance and support Connect with Dr. Arinola Dada: Website | www.drdada.com and www.overlakearthritis.com Facebook | www.facebook.com/arinola.dada Instagram | @dr.arinola_dada Linked In | www.linkedin.com/posts/drarinoladada Youtube | www.youtube.com/@healthyjointshealthylife About Dr. Arinola Dada Dr. Dada was born in Cincinnati Ohio and grew up in Lagos Nigeria, where she received her undergraduate degree and MD degree at the University of Lagos, Nigeria. She returned to the United States and completed her Internal Medicine residency at the Mercy Hospital of Pittsburgh, (now University of Pittsburgh), soon followed by a Fellowship in rheumatology at the University of Washington, Seattle. Dr. Arinola Dada is board certified in Internal Medicine, Rheumatology and Clinical Densitometry. As a practicing rheumatologist since 2001, Dr. Dada wears many hats as a mother, teacher, mentor, and speaker. She was previously a science researcher and later became affiliated with the University of Washington as a clinical instructor in Rheumatology. Her clinical interests include Rheumatoid arthritis, Ankylosing spondylitis, Gout, Psoriatic arthritis, Uveitis, Vasculitis, Myositis, Antiphospholipid Antibodies, Systemic Lupus and Osteoporosis. Dr. Dada is a fellow of the American college of Rheumatology and active in multiple professional organizations including American College of Rheumatology, Washington Rheumatology Alliance, Arthritis Foundation and many others. She has been the recipient of many awards including Top Doc for multiple years in Arthritis today, the National Arthritis foundation ‘my doc rocs' programs as well as multiple years in the Seattle Met magazine. Resources: FREE! Discover the 5 Reasons Your Weight-Loss Journey Has Gotten Derailed (And How To Get Back On Track!)

It's the most wonderful time of the year... which means all kinds of gift giving is going on. Today I talk about 12 different gifts most people with a chronic illness would absolutely love! I also talk about what NOT to gift and why!   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

This podcast was created by Adesewa Adeleye with the guidance of Dr. Daniah Basodana, pediatric rheumatologist at the Stollery Children's Hospital in Edmonton, Alberta. The podcast will discuss the clinical presentation, differential diagnosis and treatment of ANCA-associated vasculitis.  

This episode covers vasculitis.Written notes can be found at https://zerotofinals.com/medicine/rheumatology/vasculitis/ or in the rheumatology section of the 2nd edition of the Zero to Finals medicine book.The audio in the episode was expertly edited by Harry Watchman.