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Riley details her complex and often delayed diagnostic journey, the challenges of navigating the healthcare system, and which treatments have worked best for her. She also shares how she navigates daily life while living almost exclusively at home due to limited mobility and energy.Cheryl and Riley also discuss the adaptations and strategies Riley uses to manage her conditions and maintain her quality of life, including some special tips for RV living. Riley offers insights into finding peace in the moment, the importance of advocacy, and the reality of thriving in survival mode. Riley challenges the traditional idea of what it means to thrive, redefining it as being present for micro-moments of connection, joy, or peace . Her story highlights both the physical toll of chronic illness and the emotional strength required to navigate a complex and often dismissive healthcare system.Episode at a glance:Riley's Diagnosis Journey: Riley shares her journey with multiple autoimmune conditions, including lupus, rheumatoid arthritis, and Sjögren's syndrome.Treatment Trials and Tribulations: Riley opens up about experiences of medical gaslighting and the emotional toll of being dismissed by providers.The Importance of Advocacy and Self-Care: Riley and Cheryl discuss the power of symptom tracking as a tool for validation and self-advocacy in healthcare.Daily Life Adaptations when you Don't Leave Home Often: Riley shares her daily tools and strategies that work for her and her family.Finding Micro-Moments of Joy and Redefining Thriving: Riley redefines what it means to thrive—finding value in micro-moments of connection, joy, or stillness.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.Episode SponsorsRheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now!
Welcome back to our weekend Cabral HouseCall shows! This is where we answer our community's wellness, weight loss, and anti-aging questions to help people get back on track! Check out today's questions: Kris: Hi, I was wondering if you would have any suggestions ,help or feed back on dermatomyositis/antisynthetase syndrome . My husband (Anthony) was recently diagnosed with it, and everything I read and hear it seems little scary. We see a functional medicine dr. now but she is waiting to see what a rheumatologist suggests. Both my husband and myself are thinking detoxing would be the first thing we should do. Would you have any suggestions or thought on how we deal and handle this? thank you in advance Frankie: Hi Stephen, hope your having a great day. I've been dealing with post-nasal drip for a while, and my ENT believes it's caused by acid. I'm 21 and was prescribed two doses of Pantoprazole 40mg and two doses of Ranitidine 150mg, but I stopped after a month because I was supposed to take them for three months, and I don't want to stay on them that long. I had asthma when I was younger, so I wonder if that could be a factor. At this point, I don't know what else to do to get rid of it. any advice? Melissa: Hi Dr. Cabral, I took the food sensitivity test and the heavy metals test. On my food sensitivity test it showed Candida albicans and I had some heavy metals such as aluminum and mercury show up on my HM test. Do you recommend doing the detox before doing the CBO protocol or vice versa? If I could only do one, which one would you recommend? For the detox, would you recommend the heavy metals one or the general 7 days (I've never done a detox before). Also, would it be safe to start the estrogen balance and estrogen support supplements at the same time as starting a detox or CBO protocol? If I'm just trying help my body excrete estrogen would you recommend just the estrogen balance supplement? I don't make too much estrogen but it's high because my body isn't excreting it well. TY!!! Jill: Thank you Dr. Cabral for your honest and straight forward approach. I have the MTHFR gene and seek a daily vitamin with B vitamins & folate. Many products are available with the activated or methylated forms of folate, B6, and B12. However, when I take them I experience headaches, a feeling of overstimulation, and anxiousness. I spent months experimenting and broke down my multivitamin taking a complex without any B vitamins and then added in individual forms of non methylated folate and B vitamins. I had no issue when folate and B vitamins were methyl free such as folinic acid and the Hydroxocobalamin and Adenosylcobalamin forms of B12. Tell me I'm not crazy! Do you agree that some people may be sensitive to methylated nutrients? Would you consider making DNS with methyl free nutrients? Morgan: Hi Dr Cabral. I'm 34 years old and have recently been diagnosed with isolated high diastolic blood pressure (systolic is normal). I live a healthy lifestyle including daily exercise, balanced diet and maintain a healthy weight. I don't smoke or drink alcohol. I recently left a job causing me some stress but otherwise I live a pretty stress-free life and I also practice daily yoga and meditation. My mom was diagnosed with hypertension in her 20s and has been on medication since. My HCP suggested starting me on medication too. I feel very strongly about relying on a lifelong medication. My question is even though I do everything correct to prevent high blood pressure, is it possible that some things are just simply genetic? Any suggestions before trying medication? Anything helps! Thanks! Thank you for tuning into today's Cabral HouseCall and be sure to check back tomorrow where we answer more of our community's questions! - - - Show Notes and Resources: StephenCabral.com/3382 - - - Get a FREE Copy of Dr. Cabral's Book: The Rain Barrel Effect - - - Join the Community & Get Your Questions Answered: CabralSupportGroup.com - - - Dr. Cabral's Most Popular At-Home Lab Tests: > Complete Minerals & Metals Test (Test for mineral imbalances & heavy metal toxicity) - - - > Complete Candida, Metabolic & Vitamins Test (Test for 75 biomarkers including yeast & bacterial gut overgrowth, as well as vitamin levels) - - - > Complete Stress, Mood & Metabolism Test (Discover your complete thyroid, adrenal, hormone, vitamin D & insulin levels) - - - > Complete Food Sensitivity Test (Find out your hidden food sensitivities) - - - > Complete Omega-3 & Inflammation Test (Discover your levels of inflammation related to your omega-6 to omega-3 levels) - - - Get Your Question Answered On An Upcoming HouseCall: StephenCabral.com/askcabral - - - Would You Take 30 Seconds To Rate & Review The Cabral Concept? The best way to help me spread our mission of true natural health is to pass on the good word, and I read and appreciate every review!
In this episode, we review the high-yield topic of Polymyositis / Dermatomyositis from the MSK section.Follow Medbullets on social media:Facebook: www.facebook.com/medbulletsInstagram: www.instagram.com/medbulletsofficialTwitter: www.twitter.com/medbullets
Klinisch Relevant ist Dein Wissenspartner für das Gesundheitswesen. Drei mal pro Woche, nämlich dienstags, donnerstags und samstags, versorgen wir Dich mit unserem Podcast und liefern Dir Fachwissen für Deine klinische Praxis. Weitere Infos findest Du unter https://klinisch-relevant.de
QD clinics - lessons from the Clinic brought to you by RheumNow Live 2025 QD 269 CREST or More? https://youtu.be/GSBfr2S9iL4 Is this CREST or Diffuse PSS? Features Dr. Jack Cush. QD270 Acute Neck & Back Pain https://youtu.be/qWTGvqL9-wY Acute onset febrile, polyarthritis, neck and low back pain Features Dr. Jack Cush. QD271 - Treating Overlap with ILD https://youtu.be/eR7O-oy_O_g Polyarthritis, ILD, Dermatomyositis - how to treat? Features Dr. Jack Cush. QD272 - Natural RA https://youtu.be/Ie1u-_KqxVE PsO/PsA patient avoiding DMARDs and Biologics, and wants Natural therapies Features Dr. Jack Cush. QD Clinics - lessons from the clinic, sponsored by RNL2025 in Dallas, TX; Feb 8 & 9, 2025 Register at RheumNow.live
In this episode, we sit down with Dr. Victoria Werth, a leading expert in dermatology and autoimmune diseases, to explore the study Understanding the Role of Type I Interferons in Cutaneous Lupus and Dermatomyositis: Toward Better Therapeutics. Dr. Werth delves into the complex immune mechanisms that drive skin manifestations in cutaneous lupus and dermatomyositis, two challenging autoimmune conditions. She explains how Type I interferons contribute to inflammation and tissue damage, and how understanding these pathways could pave the way for more targeted and effective treatment
Summary From the 2024 SF Derm Society Annual Meeting, dermatologist, Dr. David Fiorentino discuss the significance of auto-antibodies in diagnosing dermatomyositis. He explores various phenotypes associated with the disease, emphasizing the importance of recognizing specific symptoms and patient presentations to improve diagnostic accuracy and patient outcomes. The conversation highlights the need for dermatologists to be aware of the complexities of dermatomyositis and the potential for severe complications if not diagnosed and treated promptly. Takeaways The six groups of DM specific antibodies are crucial for diagnosis. Understanding phenotypes can enhance diagnostic capabilities. NDA5 antibodies are linked to severe interstitial lung disease. Dermatomyositis can present without typical skin symptoms. Early intervention is critical for patients with NXP2 antibodies. Patients may present with atypical symptoms that require careful assessment. Auto-antibodies can guide treatment decisions in dermatology. Recognizing the signs of dermatomyositis can prevent severe outcomes. Collaboration among dermatologists is essential for patient care. Continuous education in dermatology is vital for improving patient outcomes. Chapters 00:00 - Introduction to the Future of Dermatology Podcast 00:58 - Understanding Auto-Antibodies in Dermatomyositis 03:13 - Diagnostic Approaches in Dermatomyositis 05:48 - Identifying Phenotypes in Dermatomyositis Patients 08:57 - Conclusion and Future Directions
Summary Dr. Mehdi Rashighi, MD, discusses groundbreaking research in dermatology focusing on autoimmune skin diseases. The conversation delves into multiomics research, the role of interferons in skin diseases, and the impact of UV exposure on conditions like cutaneous lupus and dermatomyositis. The episode highlights the importance of understanding cytokine signatures and the potential for new treatments targeting specific immune cells. Takeaways The SFDerm 2024 meeting showcased significant advancements in dermatology. Multiomics research is crucial for understanding autoimmune skin diseases. Type one interferon plays a key role in cutaneous lupus and dermatomyositis. Cytokine signatures can help identify new treatment targets. Plasmacytoid dendritic cells are important in the pathogenesis of lupus. UV exposure can exacerbate skin diseases like lupus and dermatomyositis. Clinical trials are exploring monoclonal antibodies against interferons. Understanding photosensitivity is vital for managing lupus patients. Research is ongoing to better understand the immune response in skin diseases. Chapters 00:00 - Introduction to the Future of Dermatology Podcast 00:56 - Exploring Multiomics in Dermatology Research 02:53 - Understanding Interferon Signatures in Skin Diseases 05:58 - Photosensitivity in Cutaneous Lupus and Dermatomyositis
In this episode, we review the high-yield topic of Dermatomyositis / Polymyositis from the Rheumatology section. Follow Medbullets on social media: Facebook: www.facebook.com/medbullets Instagram: www.instagram.com/medbulletsofficial Twitter: www.twitter.com/medbullets Linkedin: https://www.linkedin.com/company/medbullets
Chad Hartman talks with former WCCO Radio Producer Lindsay Guentzel about her battle with Dermatomyositis, how she's dealing with it, looking on the bright side of things and more, how this has helped her and more. To help her out, visit her GoFundMe https://www.gofundme.com/f/support-lindsay-guentzels-battle-with-dermatomyositis
Victoria Werth, MD interviewed by Flavia Fedeles, MD, FAAD
Welcome back Rounds Table Listeners!In this throwback episode, Drs. John and Mike Fralick discuss two papers – one, exploring IVIG in the treatment of dermatomyositis, and the second investigating the effect of tranexamic acid in patients with acute gastrointestinal bleeding.Trial of Intravenous Immune Globulin in Dermatomyositis (0:00 – 8:38).Effects of a high-dose 24-h infusion of tranexamic acid on death and thromboembolic events in patients with acute gastrointestinal bleeding (HALT-IT): an international, randomised, double-blind, placebo-controlled trial (8:38 – 18:04).And for the Good Stuff:Alberta using humour to attract workers (18:04 – 18:50).CBME in Residency Education (18:50 – 21:02).Questions? Comments? Feedback? We'd love to hear from you! @roundstable
Chad's friend and former producer Lindsay Guentzel joins the show in studio to share openly about her battle with Dermatomyositis on Rare Disease Day.
The hour begins with friend and former WCCO colleague Lindsay Guentzel joining in studio to talk about her personal battle with Dermatomyositis as the topic of rare diseases carries the full hour.
Chad reacts to his visit with Lindsay Guentzel discussing her life with Dermatomyositis and we speak about how so many in the country and around the world are struggling through similar circumstances.
आमिर खान के साथ फिल्म दंगल में काम कर चुकी सुहानी भटनागर की महज़ 19 साल की उम्र में अचानक हुई मौत से सभी सदमे में हैं. सभी यह जानकर हैरान है की सुहानी की मौत स्किन से जुड़ी किसी बीमारी से हुई है. हर किसी के जहन में बस एक ही सवाल उठ रहा है कि आखिर ऐसी कौन सी बीमारी है जिसने इतनी कम उम्र में ही सुहानी की जान ले ली. जानिए आज ABP LIVE Podcasts पर FYI में जहाँ हमारे साथ जुड़ी हैं Dr Seema Oberoi Lall, MBBS, MD - Dermatology, Venereology & Leprosy, C.K. Birla Hospital, Gurgaon
Juvenile dermatomyositis, or JDM is a rare autoimmune myopathy. In their first episode back after sitting specialty exams, Freya and Anne use a case to help explain what JDM is, as well as presentation, treatment and diagnosis (plus a couple of tangents about their day to day work as doctors!). Follow us on Instagram @yourekiddingrightdoctors Our email is yourekiddingrightpod@gmail.com Make sure you hit SUBSCRIBE/FOLLOW so you don't miss any episodes and RATE to help other people find us! (This isn't individual medical advice, please use your own clinical judgement and local guidelines when caring for your patients)
Plasma cells and derm with Dr. Alicia Schnebelen - Subcutaneous fat necrosis of the newborn - Lenabasum: A cannabinoid for dermatomyositis - Botulinum toxin for Hailey-Hailey and Darier's disease - Dr. Schnebelen's lab: https://pathnetlab.com/ Alicia Schnebelen on social media: https://www.instagram.com/skinandscope/?hl=en https://twitter.com/skinandscope?lang=en Check out our video content on VuMedi!: https://www.vumedi.com/channel/dermasphere/ Luke's PDPC course and the Intermountain Derm Society meeting: https://registration.socio.events/e/idspdpc23/promo-codes/ATTENDEE The University of Utah's Dermatology ECHO: https://physicians.utah.edu/echo/dermatology-primarycareConnect 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!)
Join us in the week's episode where Rheumatology registrar, Dr Innocent Munzeiwa, gives us the run through on Dermatomyositis.
Master Marc Zirogiannis talks about the unexpected passing of Taekwondo 1988 Olympic Gold medal winner and legend, Jimmy Kim this weekend in his home state of California from a rare disease. Statement from the family of Master Jimmy Kim (4/11/67- 6/23/23): "Master Jimmy Kim passed peacefully last night at 8:40 pm at UCSD Medical Center. Since May of 2022, Master Kim had been battling an uncommon and aggressive autoimmune disorder called Dermatomyositis that primarily attacked his lungs. He was hospitalized on Memorial Day due to breathing difficulty and low blood oxygen level and he was transferred to ICU last week until he passed. There will be more information, but the family requests privacy at this time." *This episode is presented by Bet Online. Use the promo code BLEAV for your 50% Welcome Bonus
Welcome to LUNA Listens! This is where we publish all our blog posts in audio form for you to listen to at your own pace. Today we have the privilege of being joined by one of our Professional Advisors Dr Merry Wilkinson. In this post Merry shares with us a part of her research at Great Ormond Street hospital on Juvenile Dermatomyositis. Merry breaks down and explains what JDM is and why it is important to learn and know about it during myositis awareness month. You can find a full transcription of the post by clicking this link. Find us on: Instagram - @thelunaprojectuk Twitter - @theLUNAprojectt Facebook - The LUNA Project
4.07 Polymyositis and Dermatomyositis MSK/Rheum review for the USMLE Step 1 Exam Polymyositis and dermatomyositis are autoimmune inflammatory myopathies. They are caused by abnormal activation of T cells that attack skeletal muscle and both cause proximal muscle weakness, especially of the shoulders and pelvic girdle muscles. Polymyositis develops when there is abnormal activation of CD8 T cells, while dermatomyositis is primarily attacked by CD4 T cells. Both are diagnosed through a muscle biopsy and the presence of elevated CK levels and several different autoantibodies. Dermatomyositis includes dermatologic manifestations, such as gottron papules, heliotrope rash, and shawl rash. Both are associated with MI, interstitial lung disease, and various types of cancer (dermatomyositis more so). Both diseases require prompt treatment with steroids and immunosuppressive agents.
Klinisch Relevant ist Dein Wissenspartner für das Gesundheitswesen. Zwei mal pro Woche, nämlich dienstags und samstags, versorgen wir Dich mit unserem Podcast und liefern Dir Fachwissen für Deine klinische Praxis. Weitere Infos findest Du unter https://klinisch-relevant.de
If you're listening to this right now, it means the doors to my transformational 8-week program, The Health Transformation Accelerator are OPEN. We open the doors only for a few days, a couple of times a year, so make sure to SECURE YOUR TRANSFORMATION NOW, so you don't miss out on a seat. Today's guest is another success story from HTA. Hannah is a graduate of my most recent cohort, and she seriously takes trauma release and healing anxiety to the next level. Hannah shares her struggle with trauma - undergoing surgery at only a few weeks old, receiving a series of diagnoses and ultimately being bedridden only a few years ago. Hannah has struggled with debilitating anxiety throughout her life, and she was ready to finally get her life back. Her journey from anxiety to empowerment, from trauma to deep, deep trauma release and healing, and housebound to boxing is the example we all need to know that healing IS possible. We dive into what it took for her to create enough safety in the body through HTA so she could release the trauma that was holding her back. Hannah describes the experience of her trauma release that happened about midway through the program and what that release offered her in terms of healing. Hannah is an example of someone who does the work! You can see her dedication shine through as she touches on exactly how she got rid of her anxiety once and for all through the program. She is back to sleeping, working out, and enjoying life again. Listen in as Hannah shares how finding peace and healing through HTA changed her life in just 8 short weeks, and make sure to get a notepad and pen out to take notes on what she recommends others do to get started on their journey. To contact Hannah, find her on Instagram here. To get your seat in my HTA program, click here. // Get more healing tips at faithashenden.com Follow Faith on Instagram: @thathealingfeeling Send questions and feedback at thathealingfeelingpodcast@gmail.com
Hometown Radio 03/14/23 3p: Corene Canaan battles a rare disease called clinical amyopathic dermatomyositis
Klinisch Relevant ist Dein Wissenspartner für das Gesundheitswesen. Zwei mal pro Woche, nämlich Dienstags und Samstags, versorgen wir Dich mit unserem Podcast und versorgen Dich mit Fachwissen für Deine klinische Praxis. Weitere Infos findest Du unter https://klinisch-relevant.de
Welcome back Rounds Table Listeners! We are back today with our Classic Rapid Fire Podcast! This week, Drs. John and Mike Fralick discuss two recent papers – one, exploring the use of IVIG in the treatment of dermatomyositis, and the second investigating the effect of a tranexamic acid infusion in patients with acute gastrointestinal bleeding. ... The post Episode 52 – IVIG in Dermatomyositis and Tranexamic Acid in GI Bleeding first appeared on Healthy Debate. The post Episode 52 – IVIG in Dermatomyositis and Tranexamic Acid in GI Bleeding appeared first on Healthy Debate.
Welcome back Rounds Table Listeners! We are back today with our Classic Rapid Fire Podcast! This week, Drs. John and Mike Fralick discuss two recent papers – one, exploring the use of IVIG in the treatment of dermatomyositis, and the second investigating the effect of a tranexamic acid infusion in patients with acute gastrointestinal bleeding. ...The post Episode 52 – IVIG in Dermatomyositis and Tranexamic Acid in GI Bleeding appeared first on Healthy Debate.
50 High Yield Musculoskeletal/Rheumatology Questions. Review for your PANCE, PANRE, Eor's and other Physician Assistant exams. Merchandise Link: https://cram-the-pance.creator-spring.com/►Paypal Donation Link: https://bit.ly/3dxmTql (Thank you!)
Podcast is back! This week I discuss a pivotal RCT in dermatomyositis. Check it out and be sure to subscribe to my newsletter at ebrheum.com!
Michelle Ulrich is a Registered Nurse with over 30 years of experience, specializing in cardiology. She currently works as an outcomes RN, managing cardiac registries. She is also a former national-level competitive bodybuilder, and is certified in personal training and nutrition through the National Academy.of sports medicine. She was given a diagnosis of dermatomyositis, started on immunosuppressants, and told there is no cure. She then made changes in her life and began healing. She is now off immunosuppressants. --- Support this podcast: https://anchor.fm/healingispossible/support
MSK Rheumatology part 2 of 2 review for your Pance, Panre, and Eor's. Merchandise Link: https://cram-the-pance.creator-spring.com/►Paypal Donation Link: https://bit.ly/3dxmTql (Thank you!)
In this episode our very first guest speaker Alicia Christine talks about her health journey after being diagnosed with Dermatomyositis. Follow Alicia Christine: @itsaliciachristine Connect with me: BriannaMonet App: App Store Google Play Join our new email list here. Follow me on IG: @_brianna.monet Email us: womentransformed@briannamonet.com
In this episode, Avery H. LaChance, MD, MPH, speaks about clinical pearls in dermatomyositis and cutaneous lupus, including key cutaneous features of both diseases, work-up for patients with each disease, gold standard treatments, and novel therapeutics. Dr LaChance also spoke about these topics during a session at the Congress of Clinical Rheumatology in Destin, Florida on May 14, 2022.
Victoria Werth, MD interviewed by Abel Torres, MD, FAAD
Tiffany's father and daughter have type 1 diabetes. Her daughter also has Juvenile Dermatomyositis. Show notes for people who are Bold with Insulin Learn about the Dexcom CGM You may be eligible for a free 30 day supply of the Omnipod DASH Get Gvoke Glucagon Learn about Touched By Type 1 CONTOUR NEXT ONE smart meter and CONTOUR DIABETES app Tak the T1DExchange survey A full list of our sponsors How to listen, disclaimer and more Apple Podcasts> Subscribe to the podcast today! The podcast is available on Spotify, Google Play, iHeartRadioRadio Public, Amazon Music and all Android devices The show is now available as an Alexa skill. My type 1 diabetes parenting blog Arden's Day Listen to the Juicebox Podcast online Read my award winning memoir: Life Is Short, Laundry Is Eternal: Confessions of a Stay-At-Home Dad The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here or buy me a coffee. Thank you! Follow Scott on Social Media @ArdensDay @JuiceboxPodcast Disclaimer - Nothing you hear on the Juicebox Podcast or read on Arden's Day is intended as medical advice. You should always consult a physician before making changes to your health plan. If the podcast has helped you to live better with type 1 please tell someone else how to find the show and consider leaving a rating and review on iTunes. Thank you! Arden's Day and The Juicebox Podcast are not charitable organizations.
In this episode, we review the high-yield topic of Polymyositis / Dermatomyositis from the MSK section. Follow Medbullets on social media: Facebook: www.facebook.com/medbullets Instagram: www.instagram.com/medbulletsofficial Twitter: www.twitter.com/medbullets --- Send in a voice message: https://anchor.fm/medbulletsstep1/message
Joey has a podcast that is similar to what we are doing her at Fire Through Fog and I think that is great! We need as many people as we can providing a platform for people to share their stories. Joey started his podcast after finding his way through his own fog. Connect with Joey:Instagram - https://www.instagram.com/joeybraun_/Mindshape Facebook - https://www.facebook.com/mindshape2Mindshape Instagram - https://www.instagram.com/mindshapepod/https://www.instagram.com/mindshapepodcast/Join the FIRE THROUGH FOG Facebook Group:www.facebook.com/groups/firethroughfogFollow us on Instagram: www.instagram.com/firethroughfog
Join me as the beautiful Erika shares her powerful testimony of being diagnosed with Dermatomyositis. Listen as she shares what healing, strength, & endurance looked like for her during one of her most trying times. Listen to her worship https://www.youtube.com/watch?v=XIAH373G6PE
In this episode, we review the high-yield topic of Dermatomyositis / Polymyositis from the Rheumatology section. Follow Medbullets on social media: Facebook: www.facebook.com/medbullets Instagram: www.instagram.com/medbulletsofficial Twitter: www.twitter.com/medbullets
Hey Peeps! It's Kristine and I am flying solo! Today we have a very special guest, Olympic volleyball player Tri Bourne! Not only is Tri an elite athlete, he also is a RARE. athlete, having been diagnosed with Dermatomyositis in 2016. This is going to be a great episode, so let's dive in_________________________________________________________________________________________________Tri Bourne is a professional beach volleyball player, former professional indoor player and NCAA Division 1 Men's Volleyball player for the USC Trojans. He has been a part of the United States indoor and beach national teams since 2005. He was born on the Hawaiian island of Oahu, where he grew up. Tri's journey has been truly RARE. In 2016 the onset of a rare disease came and took Tri out of the game for nearly two years. Determined to make his dreams come true Tri fought back and found himself at the Toyko 2020 Olympics. Meet Tri Bourne:I'm a beach vball professional. I got an autoimmune disease back in 2017 which kept me out for 2 seasons. I later came back, after making the most of my time off, and made the Olympic team…. Find more information at my website www.tribourne.netLearn More about Tri Myositis Journey___________________________________________________________________Connect with Tri:FB: tribourne IG:@tribourne YouTube channel: Tri Bourne ________________________________________________________________This episode is sponsored by :Consolidoc - www.consolidoc.com That's why the BC Schizophrenia Society has launched a brand new podcast, called Look Again, Mental Illness Re-examined. Host Faydra Aldridge talks to doctors, families, and people with lived experience about how to recognize mental illness, and the specific treatments that can help. Check it out. They'll really challenge you to“look again” at what you think you know about mental illness. Support the show (https://www.patron.com/findyourrare)
This week we talk candidly about how we went from beer swinging lushes to tee total vegans. In 2011 Sharon was struck down by a rare autoimmune disease, Dermatomyositis a rare skin and muscle disease that left her practically in a wheelchair. She was put on a concoction of medicines and was told to accept her “new normal.” There was no cure, but they told her they could manage the disease through drugs. After losing most of hair, little improvement on her muscles and a very extreme skin rash, she went on a mission to find another way. We discuss the highs and lows of trying to get well at a time where my husband had just left me and we were struggling with small kids. We decided to turn our backs on the bottle of red to cope and turned to wheatgrass and turmeric shots and we've never looked back. Remember to hit SUBSCRIBE or FOLLOW so you don't miss any new episodes and follow us on the links below for more: www.thedetoxbarn.co.uk www.gavinandgavin.co.uk Insta: @thedetoxbarn Facebook: @TheDetoxBarn You Tube: The funny Vegans
Die Dermatomyositis ist eine seltene durch Antikörper oder Immunkomplex bedingte Autoimmunerkrankung der Haut und inneren Organe. Diese ist eng mit der Polymyositis verbunden, welche eine Muskelschwäche der Schulter- und Beckenmuskulatur, die auf eine Entzündung zurückzuführen ist, darstellt. Treten zusätzlich zu der Muskelschwäche ebenfalls Hautveränderungen, wie ödematöse Erytheme, auf, wird diese als Dermatomyositis eingestuft.
The ABMP Podcast | Speaking With the Massage & Bodywork Profession
Listen for an exploration of an extraordinarily complex autoimmune disorder with elements of lupus, scleroderma, and muscle inflammation. Includes short tangents on the etymology of the term pathognomonic and CREST syndrome (no, not the toothpaste.) Can massage help? Or is it off the table? Sponsors: Anatomy Trains: www.anatomytrains.com Books of Discovery: https://booksofdiscovery.com Host Bio: Ruth Werner is a former massage therapist, a writer, and an NCBTMB-approved continuing education provider. She wrote A Massage Therapist's Guide to Pathology, now in its seventh edition, which is used in massage schools worldwide. Werner is also a long-time Massage & Bodywork columnist, most notably of the Pathology Perspectives column. Werner is also ABMP's partner on Pocket Pathology, a web-based app and quick reference program that puts key information for nearly 200 common pathologies at your fingertips. Werner's books are available at www.booksofdiscovery.com. And more information about her is available at www.ruthwerner.com. Recent Article by Ruth: “Critical Thinking,” Massage & Bodywork magazine, May/June 2021, page 54, Check out ABMP's Pocket Pathology: www.abmp.com/abmp-pocket-pathology-app Resources: Drugs.com. “Dermatomyositis.” Accessed June 3, 2021. www.drugs.com/cg/dermatomyositis-discharge-care.html (Accessed: 3 June 2021). Myositis Support & Understanding. “Scleroderma.” Myositis Support and Understanding. Accessed June 3, 2021. National Organization for Rare Disorders. “Dermatomyositis.” Accessed June 3, 2021. Ricceri, Federica and Francesca Prignano. “Gottron Papules: A Pathognomonic Sign of Dermatomyositis.” Canadian Medical Association Journal 185, no. 2 (2013): 148. Schwartz, Noa et al. “Lymphatic Function in Autoimmune Diseases.” Frontiers in Immunology 10 (March 20, 2019). The Myositis Association. “Diagnostic Criteria for Dermatomyositis.” Accessed June 4, 2021. VisualDx. “Dermatomyositis.” Accessed June 3, 2021. Gottron's papules https://commons.wikimedia.org/wiki/File:Dermatomyositis2.jpg Anatomy Trains is a global leader in online anatomy education and also provides in-classroom certification programs for structural integration in the US, Canada, Australia, Europe, Japan, and China, as well as fresh-tissue cadaver dissection labs and weekend courses. The work of Anatomy Trains originated with founder Tom Myers, who mapped the human body into 13 myofascial meridians in his original book, currently in its fourth edition and translated into 12 languages. The principles of Anatomy Trains are used by osteopaths, physical therapists, bodyworkers, massage therapists, personal trainers, yoga, Pilates, Gyrotonics, and other body-minded manual therapists and movement professionals. Anatomy Trains inspires these practitioners to work with holistic anatomy in treating system-wide patterns to provide improved client outcomes in terms of structure and function. Website: anatomytrains.com Email: info@anatomytrains.com Facebook: facebook.com/AnatomyTrains Instagram: instagram.com/anatomytrainsofficial YouTube: www.youtube.com/channel/UC2g6TOEFrX4b-CigknssKHA
Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Episode 95: Dawn Veselka's Story of Raising a Child With Mixed Connective Tissue Disease In this episode, guest Dawn Veselka discusses her experience raising a daughter with a mixed connective tissue disorder. Her mix is juvenile arthritis, scleroderma, Raynaud's and dermatomyositis. Sadie's triggers are exposure to viruses, sunlight, and certain foods. They determined her triggers through trial and error. Her daughter, Sadie, started showing signs of her condition at 18 months. She started showing trunk rashes, stopped being able to walk, not eating much due to jaw pain, wouldn't hold a spoon or pencil, and ate with her fingers. Dawn tried to find a diagnosis for her, but the doctors didn't think she needed to get testing for Sadie. Eventually, she couldn't move or get off the floor. She was told that she was just a worried first time mom, was told that she was putting her child through horrible tests for herself and not her child. She had to research things on the internet to find a proper doctor, and then Sadie was properly tested to find her actual diagnoses. Dawn recommends listening to your parenting instincts. To help Sadie, they tried a lot of different treatments, including medications, shots, IVIG, infusions, anti-inflammatory diets, chiropractic, and acupuncture. It took a lot of time and treatments for Sadie to be able to be more independent with activities, physically. Due to discrimination from others, Dawn and Sadie decided to do homeschooling, which has worked very well for Sadie. Dawn heard so many stories of teacher's discrimination against children with chronic illnesses. Sadie did a lot of co-ops to help with school. Although Dawn didn't want Sadie to have to use a wheelchair, Sadie greatly increased her independence and abilities when using a wheelchair, so she started using one. Dawn recommends making family a priority. Sadie prioritizes her energy and plans in down time or recovery time for afterward. Dawn has advocated for Sadie by standing up for her, getting involved in foundations, teaching Sadie to follow her internal voice, and giving up expectations others put on her. Sadie has found kind and empathetic friends who are really compassionate. Dawn taught Sadie how to stand up for herself. They use video chats to help Sadie be social when she doesn't feel well enough to get together in person. Sadie is finally in a place where her condition is very stable. Dawn uses social supports by talking with other medical moms and running a charity. To advocate for yourself, never give up, and don't search for advice from people who haven't been through it because they won't understand. Chronic Warriors Collective 1 Chronic Warriors Collective 2 Body Check Journal LinkedIn Instagram Dawn Instagram Chronic Warriors Collective Links: Email us if you have any questions or ideas! We are now on instagram! Check out updates on our website. Follow Thriving on Twitter. Check us out on Facebook! We are also on Pinterest! Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Show Music: Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org) Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org) Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org) Hosted by: Jessica Temple and Lewis Temple Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
Episode 17: Dawn Veselka's Story of Raising a Child With Mixed Connective Tissue Disease In this episode, guest Dawn Veselka discusses her experience raising a daughter with a mixed connective tissue disorder. Her mix is juvenile arthritis, scleroderma, Raynaud's and dermatomyositis. Sadie's triggers are exposure to viruses, sunlight, and certain foods. They determined her triggers through trial and error. Her daughter, Sadie, started showing signs of her condition at 18 months. She started showing trunk rashes, stopped being able to walk, not eating much due to jaw pain, wouldn't hold a spoon or pencil, and ate with her fingers. Dawn tried to find a diagnosis for her, but the doctors didn't think she needed to get testing for Sadie. Eventually, she couldn't move or get off the floor. She was told that she was just a worried first time mom, was told that she was putting her child through horrible tests for herself and not her child. She had to research things on the internet to find a proper doctor, and then Sadie was properly tested to find her actual diagnoses. Dawn recommends listening to your parenting instincts. To help Sadie, they tried a lot of different treatments, including medications, shots, IVIG, infusions, anti-inflammatory diets, chiropractic, and acupuncture. It took a lot of time and treatments for Sadie to be able to be more independent with activities, physically. Due to discrimination from others, Dawn and Sadie decided to do homeschooling, which has worked very well for Sadie. Dawn heard so many stories of teacher's discrimination against children with chronic illnesses. Sadie did a lot of co-ops to help with school. Although Dawn didn't want Sadie to have to use a wheelchair, Sadie greatly increased her independence and abilities when using a wheelchair, so she started using one. Dawn recommends making family a priority. Sadie prioritizes her energy and plans in down time or recovery time for afterward. Dawn has advocated for Sadie by standing up for her, getting involved in foundations, teaching Sadie to follow her internal voice, and giving up expectations others put on her. Sadie has found kind and empathetic friends who are really compassionate. Dawn taught Sadie how to stand up for herself. They use video chats to help Sadie be social when she doesn't feel well enough to get together in person. Sadie is finally in a place where her condition is very stable. Dawn uses social supports by talking with other medical moms and running a charity. To advocate for yourself, never give up, and don't search for advice from people who haven't been through it because they won't understand. Chronic Warriors Org Chronic Warrior Collective Body Check Journal LinkedIn Instagram Dawn Instagram Chronic Warriors Collective Links: Website Facebook Instagram Email Twitter Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
Katie is a Miami based DJ who has such an inspiring back story to tell. From looking at her, you would have no idea that she struggled with a health problem from when she was a teenager all throughout her life and has only just recently come off her medication. She shares how it all started, how it affected her life, how she finally got diagnosed with dermatomyositis, and how it gave her a greater appreciation of life. She has traveled the world, works with children, and is a DJ! She is part of The Fates Collective which is a group of female DJs who all support each other and do gigs all over the states! Katie also has a pet bird called Skylar, so we talk about life with a bird, how to train a bird, how intelligent Skylar is, etc. We really hope you enjoy learning more about Katie, about her background, what she has gone through, and also how she made it to where she is now! If you enjoy listening to our podcast and would like to support us, check out our Buy Me a Coffee page: https://www.buymeacoffee.com/jippodcast Our website: https://justinterestingpeople.com Follow Katie on Instagram: https://www.instagram.com/katieoxmusic Follow us on Instagram: https://www.instagram.com/justinterestingpeople https://www.instagram.com/rosieandre_com https://www.instagram.com/jeremieandre_fr
MedFlashGo | 4 Minutes Or Less Daily Rapid Review Of USMLE, COMLEX, And Shelf For Medical Students
Welcome To The MedFlashGo Podcast. This Is Your Daily 4 Minutes Or Less Rapid Review for medical students. Topics are based on medical board examinations including USMLE, COMLEX, And Shelf Exams. We release a new episode every weekday! In this question of the day, Sean asks students to identify the correct presentation of dermatomyositis. These questions are powered by MedFlashGo The First Voice-based interactive medical question bank currently available on Alexa. This tool allows medical students to study medical topics and be interactively tested without the use of a screen. You can study on your couch, in your car, and on the move without the use of a screen. To get access to the free audio-interactive question bank, click here or go to your Alexa application and search medflashgo In the skills section. To learn more details go to medflashgo.com and check out our frequently asked questions section. Please know that these questions were creatively designed by medical students and physicians for the purpose of education and do not replace health information given from your health professionals. We have tried our best to make sure the information is accurate please, so please let us know if you find any errors and we will be sure to correct them. --- Send in a voice message: https://anchor.fm/medflashgo/message
Meet Cassandra. She’s a mom, a wife, a dancer, a podcast host, a therapist, and also someone who is part of a very small percentage of people with an incredibly rare autoimmune disease. Although her disease is rare, her experience is far too common. In this episode, she shares her experience of getting a diagnosis, only to find out it wasn’t correct, and how her entire life changed in a matter of months. Be sure to check out Cassandra’s podcast, Diagnosed, But Not Defeated for more about her journey, as well as others who also are facing their own health challenges.Available to listen here: https://open.spotify.com/show/0kGxLAx29llOK4sAMPgLkkAnd check it out on Facebook: https://www.facebook.com/DiagnosedButNotDefeated-----Topics discussed in this episode include:misdiagnosis, grief, rare diseases, autoimmune disease, lupus, migraines, dermatomyositis, cancer, hair loss, invisible illness, spoon theory, self care, therapy, family, women’s health-----Helpful resources and links mentioned in and related to this episode:More on dermatomyositis: https://rarediseases.org/rare-diseases/dermatomyositis/Support groups for women facing hair loss:https://www.hairlossinwomen.org/womens-hair-loss-resources/cope-with-hair-loss/https://www.supportgroups.com/hair-lossSupport groups for those with lupus:www.mylupusteam.comwww.lupus.orgSpoon Theory: https://www.healthline.com/health/spoon-theory-chronic-illness-explained-like-never-before#1https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/-----Organizations there to help you in those partly cloudy days:NAMI- National Alliance of Mental Illness- www.nami.orgNAMI Helpline 800-950-6264Or text "NAMI" to 741741 for 24/7, confidential, free crisis counselingOn Instagram @namicommunicateAmerican Foundation for Suicide Prevention- www.afsp.orgCall 800-273-8255 or text TALK to 741741On Instagram @afspnationalNational Suicide Prevention Lifeline- https://suicidepreventionlifeline.org/Call 1-800-273-825If you are facing depression, anxiety, or suicidal thoughts, please reach out. Use the resources included here. Call or text a loved one. Talk to someone. Although it may not feel like it at the moment, I promise; You are loved. You are cherished. You are deserving of life.-----All the socials:Like us on Facebook www.facebook.com/partlycloudypodFollow us on Instagram @partlycloudypodWrite us at partlycloudypod@gmail.comPartly Cloudy and Dandelions is created, edited, produced, and hosted by Stephanie Charlton. Art and logo created by Cassandra Whitney. Music by Monplaisir from Pixabay.
This episode covers dermatomyositis!
Lisa Sniderman, aka Aoede, is an award-winning quirky folk-pop musician, playwright, author, and filmmaker from San Francisco. She’s been honored with more than 85 awards for songwriting, audiobooks, films, stage plays, and books since 2012 — all while living from rare autoimmune disorder dermatomyositis (or DM, as she calls it), a progressive muscle weakness disease. Her memoir, A Light in the Darkness: Transcending Chronic Illness through the Power of Art and Attitude chronicles her decade-plus journey living with DM while creating to heal. As Aoede, she creates and records unique, original full-length fantasy musicals on audiobooks that she adapts to musical theater stage plays. Her goal as an advocate is to encourage and inspire others — especially those experiencing transformations, from chronic illness and disability to unexpected life challenges. Hers is a joyful perspective on living well with chronic illness, and her latest venture is a free two-week virtual summit entitled Keep Shining: How to Thrive With Chronic Illness and Limited Energy, which will be hosted online from July 10th-24th. The summit will bring together a vibrant interactive community of 60 expert speakers; thriving artists who battle chronic illness, alternative practitioners, spiritual teachers and healers, creative therapists, thought leaders, medical professionals, and online support communities; who will share stories, resources, tools, practices, strategies, tips, and life lessons through conversational videos in order to help those of us struggling with chronic illness, caretakers, and loved ones to THRIVE. Tune in as Lisa shares: that she was first diagnosed 12 years ago — 6 weeks before her wedding that chronic illness treatment is always focused on the physical, and rarely addresses mental health and other holistic concerns what dermatomyositis is — a progressive muscle disease that also attacks and weakens her immune system that in 2010, she had a DM flare that left in hospital for a month, and led to such severe muscle weakness that she had to learn the basics of motion all over again why her life is “firmly cast in Jello” what pacing looks like when you’re living with chronic illness what to expect at her free virtual summit this month
The DISabled to ENabled podcast for people with chronic illnesses
In this episode, you'll learn more about Dermatomyositis as we chat with Lisa Sniderman about her diagnosis. The highs and the lows. Symptoms to medication to things she's found to help her condition. In the next episode find out about how she has been using creativity to heal. Get your ENabled Warrior Symptom Tracker book to help track and manage your symptoms, instantly spot triggers and get the best possible care from your doctors Check out Lisa's links"Keep Shining" youtube video:https://youtu.be/4wYJcnCvhyo My book:https://www.amazon.com/Light-Darkness-Lisa-Sniderman/dp/1681605570/ My websites and social media sites:alightinthedarkness.infodoyoubelieveinmagic.infowhataredreamsmadeof.comisloveafairytale.comaoedemuse.com facebook.com/aoedemusemusic twitter.com/aoedemuse youtube.com/aoedemuse How to Thrive Facebook group:https://www.facebook.com/groups/2521920814702414/ Lights in the Darkness-Artists, Authors, Musicians Creating to Heal-Facebook Group:https://www.facebook.com/groups/433332727132078/ Join our tribe of ENabled warriors and fight back against your chronic illness!Facebook / ENabled Warriors Insta: @ DISabledtoENabled Get the written out version of the episodes here: https://mmini.me/transcription
What are the indicators of dermatomyositis? The rash that goes along with dermatomyositis, while often uncomfortable if not painful, is so helpful in assisting the diagnosis. The presentation of the rash make it more identifyable. Inflammation of blood vessels (vasculitis) cause the muscle weakness in dermatomyositis. The pain and weakness tends to be symmetrical and the muscles first impacted tend to be the large muscle groups nearest to the core. Tasks likes rising from a seated from a position, going up stairs, lifting objects above your head, are some of the difficulties reported. There are no cures for any of the myositises. Poly and dermatomyositis are classic autoimmune diseases in that they can be relapsing/remmiting. Because this is an autoimmune disease, it is typical to see a rheumatologist for dermatomyositis. One might also see a dermatologist. Additionally, depending on the nerve and muscle involvement, one might also see a neurologist, and if the lungs and heart are involved, perhaps a pulmonologist and cardiologist. Do you or someone you know have experience with dermatomyositis?
Mary Peters, a wife and mother of three children, tells her story of life events unfolding one after another, after another. A job change, a move, a medical diagnosis of one child, to a rare disease diagnosis of another child, multiple trips to Children's Hospital and it all happening within days and weeks of each other. She shares of God's providence and provision over their family, that "He's got this" and that even in trial, they are finding joy in their journey. To get in touch with Mary, visit: www.lifestylerevoilution.com Instagram: @marypeters Facebook: Mary Dekowny Peters
Jenni Wadsworth had a juvenile autoimmune disorder called Dermatomyositis that shut down her immune system. She fought this illness from ages 12 to 18 dealing with things like coma's, hair loss, being in a wheelchair, and learning to walk again. Since her recovery she has been actively involved in theater, beauty pageants, and modeling while advocating for the fight against mental illnesses and imperfection as a whole. Become A Bigger Piece of IMPERFECT & Support Us On Patreon! --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app
In this episode, learn about Dengue, Fever of Unknown Origin, and Dermatomyositis with Peter across the streetFind out more at https://vuim-podcast.pinecast.co
Objectives:1. Identify red flags from history and physical examconcerning for systemic autoimmune diseases.2. Review antibodies and other key lab values in children withsystemic lupus erythematosus systemic vasculitis anddermatomyositis.3. Review morbidities and complications of Kawasaki Diseaseand Henoch Schonlein Purpura.
Dr. Andrew Mammen talks about what clinicians need to know about this subtype of dematomyositis.
In the first segment, Dr. Stacey Clardy continues her talk with Dr. Lawrence Weschler about his book on Oliver Sacks, And How are You, Dr. Sacks?, in the second of a two-part interview. In the second part of the podcast, Dr. Stacey Clardy talks with Dr. Andrew Mammen about his paper on more prominent muscle involvement in dermatomyositis patients with anti-Mi2 autoantibodies.
Interview with Melbourne Comedian Catherine McClintock. Catherine is Canadian and has previously lived in Tasmania for 10 years, which is where she started performing comedy. She also has experience in acting, and film and television screen writing. Catherine first performed stand-up in the RAW Comedy competition, and smashed her solo show at Melbourne Fringe this year, which was titled Please and Thank Yous. We discuss: The spreadsheet approach to the MICF, being an “extreme empath”, losing her Mum at a young age, being adopted and dealing with grief, experiences with depression and anxiety, support from a Pastor and Therapists, the importance of taking care of your mind AND your body, having a chronic autoimmune disease called Dermatomyositis, being diagnosed while still at university, the balancing act of nursing, motherhood and comedy, reflecting on her mortality and living life to the full, the challenge of being a people pleaser, dealing with “emotional vampires”, depersonalising by looking at the bigger picture and the other variables, the benefits of CBT, the book Change Your Thinking by Sarah Edelman, My Favorite Murder podcast, Catherine’s super power and her message of being kind to yourself and other people.
In this episode of Snag Brenda Forest shares with us how during her life she knew something was wrong. During her third pregnancy her symptoms became overwhelming. Brenda tell us how she was finally diagnosed and how she overcame a debilitating disease called Dermatomyositis.
In this episode I cover polymyositis and dermatomyositis.If you want to follow along with written notes on polymyositis and dermatomyositis go to https://zerotofinals.com/medicine/rheumatology/myositis/ or the rheumatology section in the Zero to Finals medicine book.This episode covers the definitions, associations, complications, features, diagnosis and management of polymyositis and dermatomyositis. The audio in the episode was expertly edited by Harry Watchman.
Back this week to discuss an interesting paper in the NEJM. Lots of interesting issues, most notably historical controls and their limitations. Find all my work at ebrheum.com!
5 Leflunomide Pearls, Pregnancy and Dermatomyositis, When its not RA
Wir sind ein Ärzteteam, das eine neue Ära in der Didaktik der Medizin einleitet. Der Zugang zur Lehre: jederzeit und überall online auf Deinem Smartphone. Podcasts, Online- und Vor-Ort-Kurse für Chirurgie, Botulinumtoxintherapie, Dermatoskopie und vieles Mehr. www.derma-to-login.com
For most of her life, Melissa Marans didn’t have an invisible illness. That all changed in 2015, when she began showing signs of rapidly worsening muscle weakness and fatigue. She went to see her doctor, and in a week, had a diagnosis: a rare autoimmune disease called dermatomyositis. On today’s episode, Melissa and I talk about the challenges she has faced, why she went silent on social media for a period of time, and how she prioritizes her own ongoing health needs while also being a mom to her newborn. Learn more about Melissa and check out the show notes here. Follow Made Visible on Instagram and Facebook. Provide us with feedback on the podcast here.
(Part 1 of 2) In this caregiver spotlight episode, meet Bruce McIntyre. For over 14 years, Bruce has helped care for his wife Kathy who has a rare autoimmune disease and is the Executive Director of Parkinson Foundation of Oklahoma. In this episode we discuss moving near extended family to obtain support, the power of resilience, how his wife's disease has impacted their two children and the monthly self-care practice that Bruce hasn't missed in over a dozen years.
(Part 2 of 2) In this caregiver spotlight episode, meet Bruce McIntyre. For over 14 years, Bruce has helped care for his wife Kathy who has a rare autoimmune disease and is the Executive Director of Parkinson Foundation of Oklahoma. In this episode we discuss moving near extended family to obtain support, the power of resilience, how his wife's disease has impacted their two children and the monthly self-care practice that Bruce hasn't missed in over a dozen years.
(Part 1 of 2) In this caregiver spotlight episode, meet Bruce McIntyre. For over 14 years, Bruce has helped care for his wife Kathy who has a rare autoimmune disease and is the Executive Director of Parkinson Foundation of Oklahoma. In this episode we discuss moving near extended family to obtain support, the power of resilience, how his wife's disease has impacted their two children and the monthly self-care practice that Bruce hasn't missed in over a dozen years.
(Part 1 of 2) In this caregiver spotlight episode, meet Bruce McIntyre. For over 14 years, Bruce has helped care for his wife Kathy who has a rare autoimmune disease and is the Executive Director of Parkinson Foundation of Oklahoma. In this episode we discuss moving near extended family to obtain support, the power of resilience, how his wife's disease has impacted their two children and the monthly self-care practice that Bruce hasn't missed in over a dozen years.
(Part 2 of 2) In this caregiver spotlight episode, meet Bruce McIntyre. For over 14 years, Bruce has helped care for his wife Kathy who has a rare autoimmune disease and is the Executive Director of Parkinson Foundation of Oklahoma. In this episode we discuss moving near extended family to obtain support, the power of resilience, how his wife's disease has impacted their two children and the monthly self-care practice that Bruce hasn't missed in over a dozen years.
(Part 2 of 2) In this caregiver spotlight episode, meet Bruce McIntyre. For over 14 years, Bruce has helped care for his wife Kathy who has a rare autoimmune disease and is the Executive Director of Parkinson Foundation of Oklahoma. In this episode we discuss moving near extended family to obtain support, the power of resilience, how his wife's disease has impacted their two children and the monthly self-care practice that Bruce hasn't missed in over a dozen years.
Buy A Light in the Darkness: Transcending Chronic Illness Through the Power of ArtI got an up close look at an amazing woman, Lisa Sniderman, Aoede, with an interview about her upcoming book A Light in the Darkness: Transcending Chronic Illness Through the Power of Art and her chronic illness Dermatomyositis. She is full of fairy sparkle and creativity. Just listening to her made me feel so inspired. We talk a lot about what it means to be chronically ill and disabled as an artist. In many ways, it is a tremendous escape to use art as a therapy when dealing with chronic pain. We go over some real ways, tools, and apps that can help you explore new art forms.Name *Lisa SnidermanWhat is your disorder? *Dermatomyositis (DM)-a rare autoimmune progressive muscle weakness disease, which attacks and weakens my immune system, muscles and skin as well as my mind and spirit, and if left untreated, could result in complete muscle wasting and long-term disability, as well as other complications.At what age did your disorder become a daily issue? *36Who were you before your illness became debilitating? *An Environmental Scientist and Singer-Songwriter-and ME-someone on go go go like that energizer bunny-hopping from activity to activity and never stopping until my body forced me to! Like when I was diagnosed: I was getting married in 6 weeks, I was prepping for a Northwest Tour and releasing my first full-length album, and planning a huge environmental workshop, and taking lapidary and songwriting classes, all at the same time.What would you do if you were not dealing with your invisible illness? *Still be on my path to fostering healing and doing expressive and teaching arts-just wouldn't have to do it WHILE battling my DM-and maybe I would be packing more into my days..What would you like people to know about your daily life? *I am NOT my disease. I spend my days in my place of joy-creating, expressing, or sharing my art and music-mostly from home so that I do not have to focus on the illness, the disease, the darkness, the doctor appointments, the things I can no longer do. It doesn't mean I don't struggle daily with weakness, get tired easily, have little stamina and energy when out in the world. It means I must choose my specific activities each day so I can make sure I have the energy for those things that DO bring me or others joy, and rest if I am going to do a big activity. I feel blessed to choose how to spend my days. I feel grateful that I am able to rest when I need to. Some days, I feel isolated from the world, but when I am out, I don't take my surroundings or my activities for granted. I treasure and try to be aware of living in each moment. I am so fortunate to have an amazing husband and supportive family and friends, and the sweetest fox terrier Alice, (I feel like I'm HER support animal!) so I don't go it alone.What would make living and moving in the world easier for you? *If I had more stamina and strength! Otherwise, I use my cane when I am out, and bring my walker if it is a longer distance. I use uber or lyft to get around, so I don't constantly have to rely on my husband and can feel more independent. Also, MORE CHAIRS when I am in stores! OMG I feel like I have to walk and walk and if I only have my cane, I tire easily-but no chair!Do you have any life hacks? *Sure! https://ourheartspeaks.org/wp-content/uploads/2018/07/Life-Lessons.pdfWhat kind of support do you get from family or friends? *I am blessed! I have surrounded myself with loving supportive family and friends during the hardest darkest moments, I learned that not everyone deals with sickness or caring for a sick person the same. I learned who stuck by me. Now that I have been living with chronic illness for 10 years, I find that most of friends get that I have limitations but don't really need to know the details of what it is like for me to go through my day to day dealing with DM. My husband is a saint and a rock. I swear I wouldn't be here let alone the person I am today without him as a true partner by my side. I love that he believes me, wants me to rest, gets that I have limitations and wants to care for me. I know how rare that is.Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *Not believe-but more like, WOW you look great! I'm so glad to see you feeling well! Or you look amazing-therefore you must feel well!How has your invisible illness affected your relationships? *Yes in that I no longer drive (I haven't since 2010) nor do I have a lot of stamina for being out in the world. That means that people who want to stay in my life often do it on my terms-e.g., come to me rather than me going to them. I am able to do more now, but that has been the case for many years. People who are close to me accommodate. Same with my crazy restricted diet-I've been gluten, sugar, and dairy free for 10 years! Another example, my Producer and I were working on a full-length fantasy musical audiobook. He lives in LA, but drove up to my house in SF Bay Area so we could work together because he knew it would be less taxing on me. Also, with my husband! I was diagnosed 6 weeks before we got married! So for all of our married life, it has been caretaker-patient relationship-especially when I flared in 2010 and had to spend a month in the hospital due to complete muscle weakness and then months of grueling rehab to regain my strength, relearn to sit up, stand, walk, sing and play. It has affected every relationship I have I suppose!Is there anything you are afraid to tell people in your life? *At times, especially because I’m almost always home, I feel like I’m hiding from the world, playing it safe indoors. Maybe that’s why I create light characters, focus on fantasy, and want to connect with my inner child. As I’ve taken on my artist-Aoede the Muse’s identity, inspiring others, I’m disinclined to share the scary, icky, fearful, sad, negative feelings—the secret spaces where I’ve stuffed my skeletons. I tell myself I have to put on a smile and be upbeat, not show weakness or have self-doubt. It’s much easier to tell the world that all is beautiful than to admit that living with a chronic illness is harder than anything I’ve ever faced; that some days it’s exhausting to get out of bed, despite my positive attitude and optimism; that I get tired of thinking and talking about being sick, and just plain being sick; that the endless therapies, drug cocktails, and unwanted side effects keep me on a roller coaster; that I resent having precious moments of my life replaced with 156 doctors’ appointments; that I wish I had more stamina for being in the world; that I wonder where David’s and my relationship would be had I never gotten sick—if he didn’t have to do all the shopping, cleaning, cooking, and driving, and we had an equal partnership instead of a caretaker- patient relationship.Does the fact that your disease is invisible change how healthcare professionals treat you? *I have had the same rheumatologist up until Oct 2017-so I felt fortunate and listened to...What is your best coping mechanism? *creating arts and music! (e.g., expressive arts-creating, recording, performing songs; creating and recording full-length musicals on audiobooks and adapting them to musical theater stage plays; sharing my story, writing and releasing my memoir; collaborating with 50 artists who use creativity to heal to share their stories; helping others navigate their personal darkness; being a teaching artistWhat are you the most concerned about and the hopeful for in the future? *Concern-that I will stay here at this place and this will be my best quality of life that I won't be able to get off the treatment-that there is no remission or cure-only manage and get the best quality of life I can; that I will flare and have setbacks and revert to the shell of a person I was in 2010 in the hospital and not have the enthusiasm and physical ability to sing, to play, to create; that I never know when I am doing too much until it is too late. I fear the unknown, particularly loss or change in security, support, and safety. In a worst-case scenario, being forced to work to maintain financial security could further stress my body, make my DM flare up, and land me back in the hospital, undoing years of recovery. I imagine losing my support, my gift of time, and my ability to live in my place of joy and focus on my art each day. I worry that I could change as a person— that I could lose my drive, my passions, my heart, and my spirit and have no room or interest to chase or follow my dreams if I were constantly stressed and concerned about making ends meet or getting sicker. I think of the negative impact such losses could have on my relationships with David and other family members, friends, and even fans. I can’t help but wonder if I even fear success because of what it might cost me. Hopes: I am managing for now! I am living in my place of joy so that is the best place I could be. I am hopeful I will continue to have the best quality of life I can. I am hopeful my energy, strength and stamina will improve over time. I am hopeful I will be able to travel, stay out in the world for longer, do activities that make me feel a sense of normalcy. I know I will continue to create to help me and others heal. Also, that there is a CURE for myositis in the future and better diagnosing so others (especially the kids juvenile myositis) don't have to suffer!What is your favorite swear word?HA! probably assIs there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.Love to make sure we talk about: my upcoming memoir: "A Light in the Darkness-Transcending Chronic Illness through the Power of Art and Attitude" Sep 21 publish date-and Myositis Awareness Day; and Lights in the Darkness-my collaboration with more than 50 artists who are using creativity to help heal to share stories of art and healing-live/streaming event in December 2018. Perhaps also success-what does it mean how has it changed etc. bc there are so many ways to think about success besides financial it is important to attract abundance into your life.What is the hardest and/or best lesson your condition has taught you?When life throws us curveballs; when we’ve lost our inspiration because of a significant change in health status, and when we live day in and day out with a chronic disease or disability, it’s tempting to want to give up our dreams, to play the victim. It’s easy to succumb to discouragement, self-pity, or even despair. But dreams and significant health challenges aren’t mutually exclusive. I’m a living example. We can live with hope, passion, and joy, even if the shape and substance of our dreams have changed. We can live well with chronic illness!What is the best purchase under $100 that helped your lifeMy unique cane! It is twisted wood and multi-colored and so fits my bright, quirky brand and personality! 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Host: Madelaine A. Feldman, MD, FACR After attending Dr. Femia’s “Challenging Cases from the Dermatology-Rheumatology Clinic” lecture at the Congress of Clinical Rheumatology’s Annual Meeting, Dr. Maddie Feldman breaks down the top three things to do when treating cutaneous dermatomyositis.
This podcast presents an approach to juvenile dermatomyositis. This podcast will review history, physical exam, key investigations, treatment, and prognosis for a child presenting with juvenile dermatomyositis. This podcast was developed by Josh Koegler, a third year medical student at the University of Alberta working with Dr. Dax Rumsey, a Paediatric Rheumatologist at the Stollery Children’s Hospital in Edmonton, Alberta.
26 April 2013: In this podcast, Dr. Robert Dellavalle speaks with Dr. Victoria Werth about increased mucin in patients with dermatomyositis and how this relates to increased accumulation of a sugar chondroitin sulfate, CD44 Variant 7 and Osteopontin. This clinical finding has been modeled in in vitro experiments of stretched fibroblasts and provides an example of how the immune system can trigger a chronic inflammatory response in the skin.
Sharon Sayler welcomes Sonia Trejo from the Alchemy of Hope and Healing to Life Interrupted Radio's Autoimmune Series. Sonia is a certified Health and Wellness Coach, patient advocate and a Master Core Energy Leadership Coach. She is also a certified Pilates instructor, a certified personal trainer through National Academy of Sports Medicine and a Nutrition Consultant. And, Sonia is someone who has been there…. She has been living with Multiple Sclerosis since 1995, and continues to defy the statistics given her diagnosis — having been told that she would be in a wheelchair and blind within ten years, to this day, 20+ years later, she maintains an active and physical lifestyle. From her personal experience and immense education in the field of healing the mind-body-spirit Sonia now shows her client's how they can live well with autoimmune too. You will discover:• The immense benefits that integrating your mind, body and spirit have on healing• Top mistakes to avoid when figuring out what's wrong with you • How to handle diagnosis shock and learn first steps to healing after your diagnosis.• And top tips to thriving regardless of where you are on the healing journey.Listen to this latest podcast at www.LifeInterruptedRadio.com/Sonia_Trejo to hear how Sonia turned seemingly insurmountable challenges into opportunities and achieve her greatest potential and how you can too. #LifeInterrupted #Autoimmune
Dermatomyositis is swelling and redness of muscle and skin.The exact cause of dermatomyositis is not known. It may be an autoimmune disorder. The immune system identifies and attacks viruses and harmful bacteria in your body. If your child is suffering from muscle weakness and an unexplained rash, dermatomyositis could be the cause. Learn more about this disease and its symptoms from Dr. Aarat Patel, a UVA Children’s Hospital specialist. Tagged under: Children's Health
Dermatomyositis and Autoantibodies by Dr. Andrew L. Mammen. This is part three of a three part series on immune-mediated myopathies and autoantibodies.
Dermatomyositis and Autoantibodies by Dr. Andrew L. Mammen. This is part three of a three part series on immune-mediated myopathies and autoantibodies.
Dermatomyositis and Autoantibodies by Dr. Andrew L. Mammen. This is part three of a three part series on immune-mediated myopathies and autoantibodies.
Wed, 09 May 2012 14:32:36 GMT http://saveyourskin.ch/podcast/DE/1.2.4.Dermatomyositis.mp4 Prof. Dr. Dr. h. c. Günter Burg, MD Zürich 2013-03-10T14:32:37Z Prof. Dr. Dr. h. c. Günter Burg, MD Zürich no
Wed, 09 May 2012 14:32:36 GMT http://saveyourskin.ch/podcast/EN/1.2.4.Dermatomyositis.mp4 Prof. Dr. Dr. h. c. Günter Burg, MD Zürich & Prof. Dr. Walter Burgdorf, MD 2013-03-10T14:32:37Z Prof. Dr. Dr. h. c. Günter Burg, MD Zürich & Prof. Dr. Walter Burgdorf, MD no
Oncologist and author Dr. Robert Buckman admits that many doctors are not good at delivering bad news to patients. His own brush with serious illness, (dermatomyositis) has helped him empathize more with patients. He is also a big believer in using humour as a coping strategy. His autobiography is "Not Dead Yet". Originally aired June 1999)
Oncologist and author Dr. Robert Buckman admits that many doctors are not good at delivering bad news to patients. His own brush with serious illness, (dermatomyositis) has helped him empathize more with patients. He is also a big believer in using humour as a coping strategy. His autobiography is "Not Dead Yet". Originally aired June 1999)
This week on Genome Barks, we welcome Dr. Leigh Anne Clark, a member of the faculty at Clemson University. Dr. Clark’s research has focused on canine genetic disease. In this podcast, we discuss Dr. Clark’s work in dermatomyositis. Dr. Clark defines the disease, and discusses prevalence, clinical signs, and tips for breeders to help future generations. Dr. Leigh Anne Clark attended Texas A&M University and received a Bachelor of Science degree in Biomedical Sciences in 2000. She subsequently entered graduate school and joined the Canine Genetics Laboratory in the College of Veterinary Medicine. Dr. Clark's thesis work concerned both the development of microsatellite DNA-based tools and pancreatic acinar atrophy in the German Shepherd Dog. She received a PhD in 2004 and remained in the Canine Genetics Laboratory for her postdoctoral work. Now an Assistant Professor of Genetics and Biochemistry at Clemson University, Dr. Clark's research continues to focus on canine inherited disease.
Can measurement of serum ferritin predict the development and severity of acute interstitial lung disease in dematomyositis? Professors Moots and Panayi delve into the paper by
Can measurement of serum ferritin predict the development and severity of acute interstitial lung disease in dematomyositis? Professors Moots and Panayi delve into the paper by
Can measurement of serum ferritin predict the development and severity of acute interstitial lung disease in dematomyositis? Professors Moots and Panayi delve into the paper by
Interferon-Alpha Beta–Mediated Innate Immune Mechanisms in Dermatomyositis by Steven A. Greenberg, MD
An Interview with Steven A. Greenberg, MD, author of Interferon-Alpha Beta –Mediated Innate Immune Mechanisms in Dermatomyositis an article appearing in American Neurological Association 664-678 2005 Published by Wiley-Liss, Inc., through Wiley Subscription Services. Interviewed by Ted Burns, MD and Erik Ensrud, MD
An Interview with Steven A. Greenberg, MD, author of Interferon-Alpha Beta –Mediated Innate Immune Mechanisms in Dermatomyositis an article appearing in American Neurological Association 664-678 2005 Published by Wiley-Liss, Inc., through Wiley Subscription Services. Interviewed by Ted Burns, MD and Erik Ensrud, MD