POPULARITY
7 episodes with danlos
7 episodes with danlos
3 episodes with danlos
3 episodes with danlos
2 episodes with danlos
2 episodes with danlos
2 episodes with danlos
5 episodes with danlos
2 episodes with danlos
Dr. Linda Bluestein is a board-certified anesthesiologist, integrative pain medicine physician and former ballet dancer who specialises in coaching and educating dancers and other athletes and individuals at increased risk of hypermobility disorders.Dr Linda's own experience with h-EDS eventually led her down a career path change that has seen her help countless others to live well with hypermobility and avoid chronic pain development. She is widely published, considered an expert on hypermobility disorders, and has lectured internationally.In this episode, Dr Linda and I sit down to discuss the link between Hypermobility spectrum disorders, hypermobile-Ehler's Danlos syndrome, mast cell activation syndrome and endometriosis.Here's what we cover:What we mean by generalised hypermobility, hypermobility spectrum disorders and hypermobility-EDS, and how they differ.What are the signs and symptoms of these conditions. The link between h-EDS and menstrual disorders, bladder dysfunction and pelvic pain and Dr Linda's approach to addressing these problems.What mast cell activation syndrome is, how it is associated with hypermobility and EDS, and how it may be a driver behind EDS and endometriosis.The link between SIBO and h-EDS and connective tissue disorders.Dr. Linda's key strategies for managing symptomatic hypermobility and h-EDS.Show NotesDr Linda's websiteBendy Bodies podcastDr Linda's InstagramNeed more help or want to learn how to work with me?Free resources:This podcast! Endometriosis Net ColumnEndometriosis News ColumnNewsletterInstagramWays to work with me:This EndoLife, It Starts with Breakfast digital cookbookMasterclasses in endo nutrition, surgery prep and recovery and pain reliefLive and Thrive with Endo: The Foundations DIY courseOne to one coaching info and applicationThis episode is sponsored by BeYou Cramp Relief Patches. Soothe period cramps the natural way with these 100% natural and discreet menthol and eucalyptus oil stick on patches. Click here to find out more and to shop: https://beyouonline.co.uk/pages/how-it-worksProduced by Chris Robson
Je reçois aujourd'hui Mylène qui souffre du syndrome d'Ehlers-Danlos. Après avoir eu un diagnostic de fibromyalgie, c'est en réalité un SED dont elle souffre. Nous avons abordé son parcours qui lui a permis d'avoir le bon diagnostic sur ces maux, mais aussi quelles étaient les démarches MDPH qu'elle a effectuées.Nous avons déjà, dans certains épisodes, abordé cette thématique-là, mais cette fois-ci elle nous parle du refus qu'elle a essuyé et de la manière dont elle a pu y remédier en faisant appel de la décision.J'espère que cela pourra aider beaucoup d'entre vous qui se sentent perdus, surtout face à un refus. Parfois, malgré le découragement que cela suscite, il faut persévérer pour avoir gain de cause et une reconnaissance à la hauteur du handicap dont on souffre.Je vous souhaite une très bonne écouteVous pouvez suivre le podcast sur son compte Instagram : Un mot sur mes mauxMontage : Yasmine FleurotMixage : SebMusique Oak StudioHébergé par Ausha. Visitez ausha.co/politique-de-confidentialite pour plus d'informations.
Bienvenue sur RARE à l'écoute, la chaîne de Podcast dédiée aux maladies rares. Pour ce quatrième épisode sur les Syndromes d'Ehlers-Danlos Non Vasculaires, nous recevons Mme Gisclard, patiente experte - ressource atteinte d'un Syndrome d'Ehlers-Danlos Hypermobile, représentante des usagers de santé et présidente de l'association UNSED - Union Nationale des Syndromes d'Ehlers-Danlos. Nous abordons aujourd'hui la survenue des premiers symptômes de la maladie, l'errance diagnostique, l'annonce du diagnostic, le rôle d'un patient expert, l'importance de l'éducation thérapeutique, ainsi que les objectifs de l'association UNSED. Si vous désirez vous informer et aller plus loin dans la connaissance de cette pathologie, nous vous donnons rendez-vous sur notre site internet www.rarealecoute.com. L'orateur n'a reçu aucune rémunération pour la réalisation de cet épisode. Invitée : Mme Gisclard – Présidente de l'association UNSED https://www.unsed.org/ L'équipe : Virginie Druenne - Programmation Cyril Cassard - Animation Hervé Guillot - Production Crédits : Sonacom
Bienvenue dans cet épisode d'États Dames ! Je suis Stéphanie, votre hôte, et aujourd'hui, je souhaite partager avec vous une histoire qui mérite d'être entendue : celle d'Amandine.Amandine, c'est une femme remarquable dont le parcours médical et personnel est marqué par la persévérance et la résilience.Sur un plan médical, Amandine a connu dès son jeune âge des fragilités physiques, notamment au niveau des chevilles et du système digestif. Avec le temps, sont venues s'ajouter des douleurs diffuses aux articulations, présentes H24 aujourd'hui. Vous découvrirez comment Amandine a dû faire face à une errance médicale de six ans avant d'obtenir enfin un diagnostic.Sur le plan émotionnel, Amandine a dû apprendre à vivre avec sa condition, malgré les regards parfois pesants des autres. Mais elle a choisi de faire face avec détermination.Au quotidien, l'épuisement chronique et l'hyper réactivité sont ses compagnons de route. Elle jongle constamment pour trouver l'équilibre dans sa vie.Je vous invite à écouter le récit authentique et poignant d'Amandine, qui témoigne de la force intérieure et de la résilience face à l'adversité.Hébergé par Ausha. Visitez ausha.co/politique-de-confidentialite pour plus d'informations.
Je reçois aujourd'hui Louise qui a 24 ans. Elle souffre d'un trouble de l'hypermobilité appelée HSD ou bien d'un syndrome d'Ehlers-Danlos. Le diagnostic précis est en cours. Sa particularité est qu'elle est en 6e année de médecine. Elle nous parlera d'ailleurs dans son témoignage de ses études et de ce que cela a changé pour elle dans son parcours.Le témoignage de Louise montre combien l'errance médicale peut-être violente, douloureuse et mène au désespoir et à des idées noires. Il est difficile lorsque l'on ne l'a pas vécue de se rendre compte de ce que c'est de vivre avec des douleurs chroniques sans reconnaissance médicale et sans savoir ce que l'on a. Parfois il peut même y avoir beaucoup de culpabilité mise sur le dos des malades en mettant en cause l'état psychique de la personne ou son stress par exemple. L'errance médicale est une véritable souffrance qui n'est pas prise en charge à sa juste mesure.Louise a eu le courage et la clairvoyance de se faire passer en priorité malgré des études de médecine très prenante. Elle a su relativiser et faire passer sa santé en priorité. Aller mieux et prendre soin d'elle pour pouvoir par la suite soigner les autres. Il est beau de voir dans le témoignage de Louise que plusieurs médecins vont se battre et chercher avec elle ce dont elle souffre.Je vous laisse découvrir son histoire et je vous souhaite une très belle écoute.Vous pouvez suivre le podcast sur son compte Instagram : Un mot sur mes mauxMontage : Yasmine FleurotMixage : SebMusique Oak StudioHébergé par Ausha. Visitez ausha.co/politique-de-confidentialite pour plus d'informations.
Joined by the sensational Heidi from Unfiltered Rise Podcast to discuss Ehler's Danlos Syndrome. We dive deep into what it is, the thirteen different types, symptoms, and what can be done to treat it. Is being double-jointed part of it? What causes it and why do medical professionals have a difficult time recognizing it? Follow Heidi on IG @ unfilteredrise_podcast Twitter @UnfilteredRise Youtube and Patreon
Michael Bush is the father to Carson, an 18-year-old diagnosed with XXY at 15, and together, they want to inspire other young men and their parents to do a podcast. Carson shares his story, from being unable to talk about XXY to his love of teaching people about it. At the age of three, Carson hit his peak in growth, and by the time he was five, he started taking growth hormones. Around 12, Carson was experiencing mobility issues, and their family doctor thought he might have Heller and Danlos syndrome. Michael wants people to know that having a child with XXY is okay. Carson grew up being a normal child, riding bikes and playing outside. Michael also wants to encourage parents not to shelter their boys because of this diagnosis and says everyone will face challenges in life.
You're invited to join us for the OTs in Pelvic Health Summit on August 19-20, 2023!Get in Touch!Learn more about pelvic health at www.functionalpelvis.com Follow Lindsey at @functionalpelvis.com (www.instagram.com/functionalpelvis) Reach out via email: lindseyvestal@functionalpelvis.comIn this episode, we discuss: The most common type of hypermobility disorder also happens to be the least understood.Libby's organizing principle for life for those with hypermobility disorderThe common experiences outside of the musculoskeletal system that people with Ehler-Danlos Syndrome Hypermobility experienceWhy do so many people with hypermobility also havepelvic dysfunction? Can you share with us a story of how optimal care would look for someone dealing with these issues? Nutrition and it's impactBarriers to adequate care for bendy peopleWhere to find Libby:Her book: Yoga for Bendy People: Optimizing Benefits of Yoga for Hypermobility by Libby HinsleyThe Hypermobility Hub (an online membership (with a free version and a premium paid version)
Avant son diagnostic, la jeune femme a subi une longue errance médicale. Finalement, grâce à un gros coup de chance, un médecin trouve enfin la raison de ses maux.Au début très affecté par cette annonce, elle trouve du réconfort en se faisant tatouer et se réapproprie ce corps source de douleurs. En une année seulement, elle recouvre son corps de ces œuvres indélébiles.Pamplelune, souriante et solaire, semble aller parfaitement bien. Elle souligne qu'en réalité, elle souffre tout le temps.
Chronic pain, muscle tightness, and fatigue are common complaints for those with Ehlers–Danlos syndrome (EDS); an inherited condition that can take over 10 years to diagnose. In this episode, Libby shares why the specialty model of medical care leaves many health concerns undiagnosed. Multi-system conditions, like Ehlers–Danlos syndrome, are hard to diagnose not only because many physicians are not educated about them, but also because people with Ehlers–Danlos syndrome experience vague clusters of symptoms that don't fit within a specific medical specialty, leaving the majority of concerns undiagnosed or left with random and overlapping diagnoses. Libby Hinsley is a Doctor of Physical Therapy and Certified Yoga Therapist specializing in the treatment of chronic pain, hypermobility disorders, and yoga-related injuries. She has taught yoga since 2005 and has trained yoga teachers for over a decade. We cover topics like: 2:33 Hypermobility and Ehlers-Danlos syndrome, symptomatic hypermobility, hypermobility spectrum disorders, and connective tissue disorders 7:19 Diagnosing Ehlers-Danlos syndrome 10:10 Common symptoms of Ehlers-Danlos syndrome 15:05 Impacts on the urogenital tract and muscular tightness 22:30 How to manage chronic pain capabilities with Ehlers-Danlos syndrome 29:10 Hypermobility and Ehlers-Danlos syndrome in men 35:00 Yoga for bendy people 40:00 Tips on finding a healthcare professional for Ehlers-Danlos syndrome I love how Libby reminds us why getting a diagnosis is freeing: because when you understand your physiology, you can learn how to approach your life without fear of the “what if.” Ehlers-Danlos syndrome involves a genetic anomaly in collagen and connective-tissue synthesis and structure. This is important to recognize when considering concerns in your pants, because the pelvic region and urogenital system are made up of collagen-rich tissues (like the bladder and pelvic ligaments). With EDS, wherever there's connective tissue, instead of having taught tissues, the tissue sags and creates an opportunity for pelvic floor prolapse, urinary and fecal incontinence, anal fissures, vesicoureteral reflux, recurrent urinary tract infections, cryptorchidism, hypogonadism, testicular torsion, and tight foreskin. Because muscle tightness in Ehlers-Danlos syndrome is a compensatory mechanism for a lack in joint stability and muscle strength, treatment plans start with simultaneously unwinding tension while building a foundation of functional strength. Before training and strengthening muscles, it's important to allow the muscles to relax first, since an already activated and contracted muscle can't contract anymore. How and why to seek a diagnosis for Ehlers-Danlos syndrome: On average, it takes 10 years, leaving many suffering for a prolonged time. There's a wide spectrum of symptom severity for people with Ehlers-Danlos syndrome. For some, the symptoms magnify quickly after surgery, viral infection, or changes in hormones (like during or after pregnancy). There are 14 types of Ehlers-Danlos syndrome, with Hypermobility Ehlers-Danlos syndrome (hEDS) being the most common. 13 of the types are diagnosable with a blood test, while the hypermobile type is diagnosed with a clinical evaluation. For healthcare providers and practitioners, rare conditions like Ehlers-Danlos syndrome are a reminder to check assumptions when considering a default diagnosis and to think outside your patterns of diagnosing by really considering all the symptoms in front of you. Refer to the Ehlers-Danlos Society checklist: https://www.ehlers-danlos.com/heds-diagnostic-checklist/ and the signs and symptoms: https://www.ehlers-danlos.com/what-is-eds/ There are many conditions that are commonly diagnosed with those who have Ehlers-Danlos syndrome. The EDS classification provides more information about these conditions https://www.ehlers-danlos.com/2017-eds-classification-non-experts/ RESOURCES: Libby's new book — Yoga for Bendy People: Optimizing the benefits of yoga for hypermobility — explores how people with joint hypermobility can avoid injury and instead, use the tools of yoga to support their thriving. The book is for all yoga teachers as well as bendy practitioners. Libby is also the co-founder of Anatomy Bites, a monthly membership for yoga teachers who want to learn anatomy in a fun, supportive, and highly relevant way. Get the book here: https://www.amazon.com/Yoga-Bendy-People-Optimizing-Hypermobility-ebook/dp/B0B169BHLF Free sex and pelvic pain resources https://drsusieg.com/resources-for-pelvic-pain-in-men Online Pelvic Pain Relief Program for Men https://drsusieg.com/pelvic-pain-in-men-online-program Norris Lab: https://www.thenorrislab.com/research/ehlers-danlos-syndrome CONNECT WITH Libby Hinsley: Websites: https://www.libbyhinsley.com/ www.AnatomyBites.com www.TheHypermobilityHub.com/ Instagram: @libbyhinsleypt CONNECT WITH ME (DR. SUSIE): Website: https://drsusieg.com/ Instagram: https://www.instagram.com/dr.susieg/ 15-minute call: https://drsusieg.com/pelvic-pain-specialist-15-minute-call Disclaimer: This information is not intended to substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of a healthcare professional with any questions you may have regarding treatment, medications/supplements, or any medical diagnoses. This information is intended for educational purposes only and is in no way to substitute the advice of a licensed healthcare professional.
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: Eilise: Hello Dr. Cabral, My 9 year old daughter has suffered greatly most of her life from chronic stomach pains, switching between constipation and diarrhea. She has Hyper mobility in her arms and hips, has cold hands, often feels itchy without there being any visible rash. Has very bad eyesight, thin, brittle, slow growing hair and can't gain weight. She is 40th percentile in height and 2 percentile in weight. I've been on a wait list to see a geneticist for possible ehlers-Danlos syndrome. It seems very likely that she has ehlers-Danlos and possibly some accompanying issues. We eat organic and gluten free, grass fed beef, Ive tried giving her liver capsules, omega 3's, cod liver oil, digestive enzymes, and even c60 to try and help get her as much nutrients as possible but she goes through periods of time where her stomach hurts so much she can't take them. I desperately need help to figure out what I am missing to relieve her pain and help her be able to improve her digestion and absorption of food so she can heal. Do you have recommendations for how to manage the symptoms of ehlers Danlos to improve her quality of life? Thank you for all the work you've done to help people in need. Looking forward to hearing from you. Sincerely, Eilise Anna: Hello Dr. Cabral, I´ve just read your book and I thought it was very interesting and eyeopening. My son is 20 years old, we live in Holland, and he was born pre-mature and dismature. He´s had an eatingproblem the first 3 years and a lot of ear infections. He now wears hearing aids. I also recognised myself in your comments that you felt you never got answers at the several hospitals. My son, first discovered when he was four years old, has also numerous calcifications in his muscles. He is fairly healthy, can do sports, but it does trouble him and the calfifications in his feet are often inflamed if he does too much. Up to now, they only take blood tests, urine tests and occasional photo's. They haven´t seen a simmilar case in Holland and I find it difficult they can tell me so little. Can these calsifications be auto-immune related? Do you have any idea what could cause them? Thank you for now for all I´ve learned up to this point. Carl: I have a sluggish (low) metabolism. Every morning I wake up feeling shaky. My morning blood sugar can be anywhere between 85-115. My morning blood pressure is 150's/100's. As the day goes on, it gets better. Every time I try to go on a diet and cut out the crap (mostly carbs) I feel shaky all day and the blood pressure stays elevated all day. even though blood sugar is fine. I realize this is most likely a Cortisol issue. I do have Candida issues/through lab testing. How can I get enough good carbs to lose weight, yet keep my metabolism up, BP low and keep Cortisol normal? Thanks, Carl Tiffany: Hello Dr. Cabral. I am a daily listener to your podcast as I try to incorporate what I can into better healthy lifestyle for me and my family. We really appreciate it. My son is 16 and we started noticing that one of his hands shakes. I was distracted by it the other day as he was talking to me so it is noticeable. He is a healthy strong guy (6ft tall). Does pole vaulting and lifts and cardio. Not anxious or really stressed. Eats fairly good. He does not eat a lot of sugar or sweets. Can you give me some ideas to look at to help him with this? I'm not sure where to start for him. It has been going on for several months but seems to be getting more noticeable. Thanks so much Joesph: I'll try to make the long story as short as possible: my wife has well controlled diabetes, however in the past five years she has developed complete numbness in her feet, calves, and it has now spread to her hands. Additionally, she has nearly constant muscle fasciculations, with occasional painful cramping. We know it's demyelination but no one knows why it's occurring. She has had every test available and everything shows she is the picture of health (aside from diabetes). She has had tests for tropical disease, other exotic diseases, genetic testing, you name it she had the test. She's even been to the Cleveland Clinic multiple times. Recently she had a spinal tap which also showed nothing wrong; however, it did show 3 oligoclonal bands found in both the cerebral spinal fluid and the serum. Analysis of this was basically “something autoimmune”. On a side note, her spleen occassionaly swells so much you can see it pushing against her skin. We are at our wits end, and she has said that she's not doing anything else, she's been through enough. Can you help us try to find the right path to heal her? Jade: Hi. Dr Cabral. Thank you for sharing all your knowledge with us. Truly a blessing! I am 57 years old. I have fibromyalgia, IBS, silent reflux and Gilbert's syndrome. I suffer daily with chronic fatigue, severe stomache issues (everything I eat hurts my stomache…gas, bloating, cramping, and loose stools) anxiety, whole body pain and trouble sleeping. Oh, and my cholesterol is high. I've also had EBV in the past. I'm always in fight or flight mode. I worked full time for 30 years in a very stressful workplace and I've always felt drained. I have gone though a lot of emotional trauma in the last few months. Which has made everything worse. I do eat very clean and healthy. No processed junk at all. Everything's organic. I pray and meditate daily. I walk when I'm not in a flare up and I do yoga. CBD oil seems to help but I'm not sure if that will cause more problems with the Gilbert's so I've stopped it until I know if it's ok to continue with it. What do you suggest for me? I can't afford your 1 on 1 consultations but I will do whatever else you recommend. Thank you to you and your team for all that you do!!! 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/2486 - - - 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? 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Mindset Monday Life can rife with suffering, but your pain is not YOU.Get 1% - Every Day!https://betterdaily.liveMusic in Intro and Outro used with permission: "Doves" by We Are All Astronautshttps://www.weareallastronauts.net/
Dans cet épisode, nous allons à la rencontre d'Anne-Sophie Deckers, influenceuse belge qui compte aujourd'hui des milliers d'abonnés sur sur son compte Instagram. Bien que connue pour ses looks colorés, ses voyages humanitaires et ses bons plans, Anne-Sophie cache derrière sa personnalité pétillante, ses souffrances physiques et parfois mentales. Longtemps, Anne-Sophie n'a pas compris de quoi elle souffrait. Jusqu'à ce qu'elle subisse une agression qui lui causera un traumatisme venu fortement intensifer les symptomes d'un syndrome qu'elle portait en elle depuis son plus jeune âge. Ce syndrome, c'est le syndrome d'ehlers danlos, plus communément appelé le SED dont je suis moi aussi porteuse. Il s'agit d'une maladie génétique qui affecte la production de collagène. Je vous laisse écouter cet episode qui j'espère résonnera à tous ceux qui souffrent derrière leurs jolis sourires et joie de vivre
Flex Friday Season 3 Finale!Our top 2 episodes of Flex Friday in the last year!Video version of Flex Fridays HERE:https://betterdaily.disciplemedia.com/hashtag/flexfriday"Pull-Up Tutorial"Spotify - https://open.spotify.com/episode/6No4Tz9hNGsspyemURgLTd?si=5oE6L4LJQGe0OvtqkBePUgApple Podcasts - https://podcasts.apple.com/us/podcast/s1-e5-how-to-do-a-pull-up/id1589783125?i=1000538680274"High Intensity Interval Training"Spotify - https://open.spotify.com/episode/21wCfyuQgHWwLOPnOwtId9?si=vApKph6nSw292idERGav4QApple Podcasts - https://podcasts.apple.com/us/podcast/s1-e100-high-intensity-training/id1589783125?i=1000552920175Music in Intro and Outro used with permission: "Doves" by We Are All Astronautshttps://www.weareallastronauts.net/
Word Thursday Honesty is more than just "telling the truth". What does it mean to be "free of fraud"? be you. just BETTER. https://betterdaily.live Join the Faithful40 Challenge! https://betterdaily.live/faithful40
Dr. Linda Bluestein is a board-certified anesthesiologist, integrative pain medicine physician and former ballet dancer who specialises in coaching and educating dancers and other athletes and individuals at increased risk of hypermobility disorders. Dr Linda's own experience with h-EDS eventually led her down a career path change that has seen her help countless others to live well with hypermobility and avoid chronic pain development. She is widely published, considered an expert on hypermobility disorders, and has lectured internationally. In this episode, Dr Linda and I sit down to discuss the link between Hypermobility spectrum disorders, hypermobile-Ehler's Danlos syndrome, mast cell activation syndrome and endometriosis. Here's what we cover: What we mean by generalised hypermobility, hypermobility spectrum disorders and hypermobility-EDS, and how they differ. What are the signs and symptoms of these conditions. The link between h-EDS and menstrual disorders, bladder dysfunction and pelvic pain and Dr Linda's approach to addressing these problems. What mast cell activation syndrome is, how it is associated with hypermobility and EDS, and how it may be a driver behind EDS and endometriosis. The link between SIBO and h-EDS and connective tissue disorders. Dr. Linda's key strategies for managing symptomatic hypermobility and h-EDS. Show Notes Dr Linda's website Bendy Bodies podcast Dr Linda's Instagram Let's get social! Come say hello on Instagram or sign up to my newsletter. My cookbook This EndoLife, It Starts with Breakfast is out now! Get 28 anti-inflammatory, hormone friendly recipes for living and thriving with endometriosis. Order your copy here. If you feel like you need more support with managing endometriosis, you can join Your EndoLife Coaching Programme. A 1-to-1 three month health and life coaching programme to help you thrive with endometriosis. To find out more about the programme and to discuss whether it could be right for you, email me at hello@thisendolife.com or visit my website. This episode is produced by Ora Podcasts. Ora provides audio editing, management and other services to make podcasting simple and sustainable for their clients. Health coaches, nutritionists, mediums, personal trainers, tarot readers, teachers, or just those striving for a better world, Ora can help you start and maintain your podcast. Get in touch today. This episode is sponsored by BeYou Cramp Relief Patches. Soothe period cramps the natural way with these 100% natural and discreet menthol and eucalyptus oil stick on patches. Click here to find out more and to shop: https://beyouonline.co.uk/pages/how-it-works My free guide ‘Managing Endometriosis Naturally' is perfect for anyone just starting out on this journey of managing and reducing their symptoms. Download here. My free Endometriosis Diet Grocery List is a pdf list that includes all the foods I buy on a monthly basis, categorised into easy sections. I share my personal endometriosis diet plan, free recipe resources, recommendations to help you get started with the endometriosis diet and nutrition tips. Download here. My free “Endometriosis Symptom Tracker” could help you begin to understand the subtle patterns in your endometriosis symptoms. As always, this guide doesn't replace your medical treatment and is not intended to treat or cure endometriosis, but provides you with options that helped me to live well with endometriosis. Download here.
Flex Friday Coach Alex spends some time opening up about what it's like to live with Ehlers Danlos and encourages those who are carrying a heavy load. Read his story published on the EDS Society Webpage:https://www.ehlers-danlos.com/my-awareness-mission/ Don't carry your cross alone! https://betterdaily.live
Julie est atteinte du Syndrome d'Ehlers-Danlos certainement depuis toute petite. La maladie devient invalidante vers l'âge de 16 ans, la poussant à abandonner son rêve de pâtisserie. Puis s'en suivent 4 ans supplémentaire d'errance médicale avant qu'un diagnostique ne soit posé. Elle a souhaité témoigner sur le podcast pour faire connaître ce syndrome mais aussi pour parler de manière décomplexée et légère des maladies invisibles.Pour nous raconter votre histoire ou nous proposer un sujet, envoyez-nous un mail à 100tabou.podcast@gmail.com, ce sera un plaisir d'en discuter avec vous !Si vous voulez nous aider à libérer les paroles et engager de nouvelles conversations, partagez le podcast autour de vous, que ce soit sur vos réseaux sociaux ou à vos proches.Crédit musique : S-Coast https://soundcloud.com/s-coastPodcast produit par Positiv Studio https://www.positivstudio.comÀ très vite ! Hébergé par Acast. Visitez acast.com/privacy pour plus d'informations.
Nutrition Tip Tuesday Resistant Starches can do amazing things for your gut health AND athletic performance! Join Better Daily and make progress on your journey today.https://betterdaily.live
Mary Broddle wanted to be an engineer from the age of 5, and has had a very successful career in mechanical engineering – in a typically male-dominated environment. She worked hard and really enjoyed her work in the corporate sphere, but in the background her health was deteriorating, until eventually she had to make the difficult decision to quit it all and focus on her physical, emotional and mental wellbeing.It was round about this time that she re-discovered a pastime she enjoyed as a youngster, although now is ready to take it to the next level, sharing the holistic benefits she has gleaned from mindful and contemporary stitching with others. CreativityFound.co.ukInstagram: @creativityfoundpodcastFacebook: @creativityfoundpodcastPinterest: @creativityfoundTwitter: @creativityfoundClubhouse: @clairewaitebrown and Creativity Found Connect clubMary Broddle at Creativityfound.co.ukMusic: Day Trips by KetsaUndercover / Ketsa Creative Commons License Free Music Archive - Ketsa - Day TripsArtworks: Emily Portnoi emilyportnoi.co.ukSupport the show
Nutrition Tip Tuesday What "works" for someone else might not "work" for you. Here's WHY according to science! Get our premium nutrition resources (seminars, meal plans, and MORE)https://betterdaily.live Use promo code "POD" to save 25% on your premium subscription!
That's right, it's the Grand Finale of My Immune System Hates Me! Tune in to hear updates on Chelsey, her mom, and why it's time to put the show to an end.You can still keep in touch with Chelsey on Instagram, either @chelseyboom or @myimmunesystempod. You can also email myimmunesystempod@gmail.com.Join us on Zoom for the weekly Rheumatoid Arthritis Warrior Group!Thank you all for your support!
Healing from this disease
Wildcard Wednesday!Did you know that your genetic makeup has BETTER locked inside of it? It's science. The scientific field of epigenetics can teach us how to play a better game with the hand we've been dealt! Let Alex VanHouten make this confusing and exciting reality practical to your journey! Join the next Faithful40 Challenge:https://betterdaily.live/faithful40Join the Better Daily* Family today:https://betterdaily.live Use code "POD" at checkout to save 25% on your subscription *“Better Daily” is an 5-Star Rated App for iOS and Android operating systems that aims to make your screen time work FOR YOUR MENTAL, PHYSICAL, AND SPIRITUAL HEALTH rather than AGAINST THEM - combining the positive atmosphere, nutrition resources, and workout programs of The Betterment Company with regular community challenges, exclusive workshops, credentialed coaching support and MORE - Better Daily is a powerful way to invest in becoming 1% Better. Every. Single. Day!Questions? Awesome. Reach out to Betterment-bot@betterdaily.live !
Follow Taylor (and Chops!) on Instagram @pigpackmom.Check out our website, myimmunesystempod.com, where you can get in contact with Chelsey, listen to old episodes, learn about the RA Warrior Group, buy a signed copy of Chronically Empowered, and apply to be a guest on the show.Don't forget to rate and review the show, and follow us on Instagram and Facebook @myimmunesystempodThis episode is sponsored by Grace & Able. Visit https://www.graceandable.com/discount/IMMUNE10 for 10% off your purchase. Follow Grace & Able on Facebook and Instagram.***Any information discussed in this podcast is strictly my opinion and those of my guests and are for informational purposes only. We are speaking from our personal experiences and you should always consult with your doctor or medical team.
‘Síndrome de Elhers Danlos'. Las personas que lo padecen están condenadas a vivir sin la esperanza de encontrar una cura. El Síndrome de Elhers Danlos también conocido como SED, es un conjunto de trastornos heredados que afectan generalmente la piel, las articulaciones y los vasos sanguíneos. Tania Pueyo nos comparte su experiencia al padecer esta enfermedad. Ella permanece en una lucha constante física, emocional, pero sobre todo como persona y paciente, que quiere generar un cambio y dejar un mundo mejor para los que vienen. Nos habla también de su proyecto Prometeo Encadenado. Este es un Documental que nos permitirá ver más de cerca la vida de un ‘Elhers Danlos'. Para apoyar con donaciones pueden entrar a la página de Facebook “Prometeo Encadenado”. --- Send in a voice message: https://anchor.fm/detooodounpoco/message Support this podcast: https://anchor.fm/detooodounpoco/support
‘Síndrome de Elhers Danlos'. Las personas que lo padecen están condenadas a vivir sin la esperanza de encontrar una cura. El Síndrome de Elhers Danlos también conocido como SED, es un conjunto de trastornos heredados que afectan generalmente la piel, las articulaciones y los vasos sanguíneos. Tania Pueyo nos comparte su experiencia al padecer esta enfermedad. Ella permanece en una lucha constante física, emocional, pero sobre todo como persona y paciente, que quiere generar un cambio y dejar un mundo mejor para los que vienen. Nos habla también de su proyecto Prometeo Encadenado. Este es un Documental que nos permitirá ver más de cerca la vida de un ‘Elhers Danlos'. Para apoyar con donaciones pueden entrar a la página de Facebook “Prometeo Encadenado”. --- Send in a voice message: https://anchor.fm/detooodounpoco/message Support this podcast: https://anchor.fm/detooodounpoco/support
Ehler Danlos Syndrome with Mik LenthMik Lenth is 19 and lives in the MidWest in the US and has Ehlers Danlos Syndrome (EDS) which affects her connective tissue. The type that Mik has is hypermobility which means that her joints come out of place and dislocate.Mik talks us through her condition and how it has affected her growing up, particularly at school and how it continued into employment. The symptoms have progressively got worse and has led to several operations on her jaw and knee.With a good support system Mik doesn't let her chronic illness hold her back and is looking forward to studying in Madrid this year and advocating for invisible disabilities.If you are experiencing problems discussed in this podcast contact your GP.For supportCharity: Ehlers Danlos Support UK.Hosted by Chantal Boyle and Lynn Smith, Hidden Disabilities Sunflower.Want to share your story? email conversations@hiddendisabilitiesstore.comVisit the Hidden Disabilities Sunflower website.
Bienvenue sur RARE à l'écoute, la chaîne de Podcast dédiée aux maladies rares. Pour ce quatrième épisode sur les Syndromes d'Ehlers-Danlos Non Vasculaires, nous recevons Mme Gisclard, patiente experte - ressource atteinte d'un Syndrome d'Ehlers-Danlos Hypermobile, représentante des usagers de santé et présidente de l'association UNSED - Union Nationale des Syndromes d'Ehlers-Danlos. Nous abordons aujourd'hui la survenue des premiers symptômes de la maladie, l'errance diagnostique, l'annonce du diagnostic, le rôle d'un patient expert, l'importance de l'éducation thérapeutique, ainsi que les objectifs de l'association UNSED. Si vous désirez vous informer et aller plus loin dans la connaissance de cette pathologie, nous vous donnons rendez-vous sur notre site internet www.rarealecoute.com. L'orateur n'a reçu aucune rémunération pour la réalisation de cet épisode. Invitée : Mme Gisclard – Présidente de l'association UNSED https://www.unsed.org/ L'équipe : Virginie Druenne - Programmation Cyril Cassard - Animation Hervé Guillot - Production Crédits : Sonacom
Bienvenue sur RARE à l'écoute, la chaîne de Podcast dédiée aux maladies rares. Pour ce troisième épisode sur les Syndromes d'Ehlers-Danlos Non Vasculaires, nous recevons le Dr Karelle Bénistan, médecin clinicien, responsable des consultations maladies rares au sein du centre de référence des Syndromes d'Ehlers-Danlos Non Vasculaires à l'hôpital Raymond-Poincaré, à Garches et coordinatrice du récent PNDS sur les Syndromes d'Ehlers-Danlos Non Vasculaires sous l'égide de la filière OSCAR. Nous abordons aujourd'hui la prise en charge ostéo-articulaire des Syndromes d'Ehlers-Danlos Non Vasculaires, le rôle de l'éducation thérapeutique dans la prise en charge et son intégration dans le projet de soins, ainsi que l'adressage des patients vers les centres experts. Si vous désirez vous informer et aller plus loin dans la connaissance de ces pathologies, nous vous donnons rendez-vous sur notre site internet www.rarealecoute.com. L'orateur n'a reçu aucune rémunération pour la réalisation de cet épisode. Invitée : Dr Karelle Bénistan – Hôpital Raymond-Poincaré - Garches http://raymondpoincare.aphp.fr/syndromes-dehlers-danlos/ L'équipe : Virginie Druenne - Programmation Cyril Cassard - Animation Hervé Guillot - Production Crédits : Sonacom
Make sure you rate and subscribe to My Immune System Hates Me! and follow @myimmunesystempod on Instagram and Facebook for episode updates. You can also email myimmunesystempod@gmail.com if you'd like to get in touch!You can find Chelsey on Instagram @chelseyboom. Her Rheumatoid Arthritis Warrior Group will meet on Thursdays at 7pm EDT. To join the conversation, join the Facebook group or just hop on Zoom! Rheumatoid Arthritis Warrior Group Zoom LinkCheck out Samantha's graphic design page on Instagram @spasielskidesignsMisti's websites are Misti Blu Dream,Wildling Apothecary, and Blu Dream Health Collective. Her Instagram pages are @mistibluday,@wildlingapothecaryus, and @bludreamhealthYou can visit Jana's website janamilligan.com and check out her shop at millieandmoonflower.com. If you want to get in touch with her, you can find her on Instagram @janamilligan, on Facebook at Autoimmune Coaching for Women, or you can email her directly at info@janamilligan.com.If you'd like to get in touch with Anna, you can find her on Facebook, Instagram, or on YouTube.You can find Mary on Instagram, Facebook, or Twitter, as well as her website, MaryBergstrom.com.Don't forget to check out Gillian's website and Instagram! You should also listen to her podcast, Sober Powered.Make sure you check out Brandon's website, Instagram, Twitter, and Facebook. Preorder Brandon's book, "I'm Still Kickin'" here!You can find Stefanie through her website, Instagram, and Facebook pages.Follow Ray on Instagram @switchdad.
Bienvenue sur RARE à l'écoute, la chaîne de Podcast dédiée aux maladies rares. Pour ce deuxième épisode sur les Syndromes d'Ehlers-Danlos Non Vasculaires, nous recevons le Dr Fabrice Gillas, médecin du sport, Praticien Hospitalier au sein du centre de référence des Syndromes d'Ehlers-Danlos Non Vasculaires à l'hôpital Raymond-Poincaré, à Garches. Nous abordons aujourd'hui les signes qui doivent faire penser à une hyperlaxité articulaire généralisée, les symptômes qui peuvent faire évoquer un des syndromes d'Ehlers-Danlos et les examens diagnostiques de 1ère intention à réaliser avant d'adresser les patients à un centre expert. Si vous désirez vous informer et aller plus loin dans la connaissance de ces pathologies, nous vous donnons rendez-vous sur notre site internet www.rarealecoute.com. L'orateur n'a reçu aucune rémunération pour la réalisation de cet épisode. Invité : Dr Fabrice Gillas – Hôpital Raymond-Poincaré - Garches http://raymondpoincare.aphp.fr/syndromes-dehlers-danlos/ L'équipe : Virginie Druenne - Programmation Cyril Cassard - Animation Hervé Guillot - Production Crédits : Sonacom
If you'd like to purchase "Disjointed" by Diana Jovin, you can find it on Amazon.Make sure you rate and subscribe to My Immune System Hates Me! and follow @myimmunesystempod on Instagram and Facebook for episode updates. You can also email myimmunesystempod@gmail.com if you'd like to get in touch!***Any information discussed in this podcast is strictly my opinion and those of my guests and are for informational purposes only. We are speaking from our personal experiences and you should always consult with your doctor or medical team.
Bienvenue sur RARE à l'écoute, la chaîne de Podcast dédiée aux maladies rares. Pour ouvrir cette saison 16 sur les Syndromes d'Ehlers-Danlos Non Vasculaires, nous recevons le Dr Caroline Michot, médecin généticien, Praticien Hospitalier à l'hôpital Necker-Enfants malades et coordinatrice du récent PNDS sur les Syndromes d'Ehlers-Danlos Non Vasculaires sous l'égide de la filière OSCAR. Nous abordons aujourd'hui les Syndromes d'Ehlers-Danlos Non Vasculaires, les principaux symptômes d'alerte qui peuvent faire évoquer ce diagnostic, les diagnostics différentiels à écarter et les examens de 1ère ligne que le médecin traitant peut effectuer avant d'adresser les patients à un centre de référence. Si vous désirez vous informer et aller plus loin dans la connaissance de ces pathologies, nous vous donnons rendez-vous sur notre site internet www.rarealecoute.com. L'orateur n'a reçu aucune rémunération pour la réalisation de cet épisode. Invitée : Dr Caroline Michot - Hôpital Necker-Enfants malades - Paris https://www.filiere-oscar.fr L'équipe : Virginie Druenne - Programmation Cyril Cassard - Animation Hervé Guillot - Production Crédits : Sonacom
Chelsey's Rheumatoid Arthritis Warrior Group will meet on Thursday, June 15th at 7pm. To join the conversation, visit this event page.Make sure you rate and subscribe to My Immune System Hates Me! and follow @myimmunesystempod on Instagram and Facebook for episode updates. You can also email myimmunesystempod@gmail.com if you'd like to get in touch!***Any information discussed in this podcast is strictly my opinion and those of my guests and are for informational purposes only. We are speaking from our personal experiences and you should always consult with your doctor or medical team.
¿Alguien podría pensar en las criaturas? El músico Danlos D nos acompaña a hablar sobre héroes clasificación R. Patreon: https://www.patreon.com/desarmandopodcast FB: https://www.facebook.com/DesarmandoPodcast TW: https://www.twitter.com/desarmandopod IG: https://www.instagram.com/desarmandopodcast YT: https://www.youtube.com/c/desarmandopodcast
Danlos D es un artista y productor musical de Rap, Funk, Hip Hop, Dance Hall y música urbana nacido en la “Comarca Lagunera” de Torreón, Coahuila, México. Su estilo es definido por la unión de diversos géneros musicales con inspiración en la cultura oriental y sus orígenes latinos, un toque de nostalgia y resiliencia son característicos dotándolo de gran originalidad en cada una de las producciones musicales y audiovisuales. Acompáñennos a ver la historia de Danlos D para conocer más acerca de esta interesante fusión musical y del camino que ha tenido que recorrer hasta el momento para ir en la búsqueda de sus sueños, desde donde nació su gusto por el rap, hasta lo que es hoy en día.
A 17 ans, Andrea est diagnostiquée du syndrome d'Ehlers-Danlos, une maladie génétique rare qui touche les tissus conjonctifs, que l'on appelle "le ciment du corps". crédits Montage : Fanny ZMT / Production : MedShake Studio Ce podcast est réalisé avec le soutien de Sun app, l'application communautaire d'échanges entre personnes malades.
Make sure to check out Misti's website, apothecary, and instagram pages!Misti Blu DreamWildling ApothecaryBlu Dream Health CollectiveInstagram: @mistibluday, @wildlingapothecaryus, @bludreamhealthYou can follow Chelsey on instagram @chelseyboom and the show @myimmunesystempod. You can also email myimmunesystempod@gmail.com if you'd like to get in touch! Don't forget to rate and subscribe!***Any information discussed in this podcast is strictly my opinion and those of my guests and are for informational purposes only. We are speaking from our personal experiences and you should always consult with your doctor or medical team.
A 17 ans, Andrea est diagnostiquée du syndrome d'Ehlers-Danlos, une maladie génétique rare qui touche les tissus conjonctifs, que l'on appelle "le ciment du corps". crédits Montage : Fanny ZMT / Production : MedShake Studio Ce podcast est réalisé avec le soutien de Sun app, l'application communautaire d'échanges entre personnes malades.
Make sure you rate and subscribe to My Immune System Hates Me! and follow @myimmunesystempod on Instagram for episode updates. You can also email myimmunesystempod@gmail.com if you'd like to get in touch!***Any information discussed in this podcast is strictly my opinion and those of my guests and are for informational purposes only. We are speaking from our personal experiences and you should always consult with your doctor or medical team.
Have you been diagnosed with: Dysautonomia (including POTS) Ehlers-Danlos Syndrome (EDS) MCAS Thinking a service dog may be able to help you, but unsure of what TASKS the dog can be trained to do to help you? This podcast is for you! HeartSoulK9.com
Episode Notes In Episode 201, I do another in my series "What's Your Condition?" This time I look at Ehler's Danlos Syndrome. We look at the way it is understood online, what people with it refer to themselves as Zebras, and we also explore the history and behind it, as it is one of the oldest bruising and bleeding disorders ever. We discuss what cool celebrities have it, and we talk about how EDS can play a role in your sex life. Enjoy! Buy a #DisabledPeopleAreHot tee shirt, and support the movement here https://store.podcastjukebox.org/collections/disabled-people-are-hot You can get 50% off almost any item in store at www.adameve.com and 10 FREE GIFTS by using DARKPOD at check out! Also, support Disability After Dark by pledging to the patreon. www.patreon.com/disabilityafterdark This podcast is powered by Pinecast.
Au cœur de la nuit, les auditeurs se livrent en toute liberté aux oreilles attentives et bienveillantes d'Olivier Delacroix du lundi au jeudi et de Sabine Marin du vendredi au dimanche. Pas de jugements ni de tabous, une conversation franche mais aussi des réponses aux questions que les auditeurs se posent.Un moment d'échange et de partage propice à la confidence pour repartir le cœur plus léger.
Au cœur de la nuit, les auditeurs se livrent en toute liberté aux oreilles attentives et bienveillantes d'Olivier Delacroix du lundi au jeudi et de Sabine Marin du vendredi au dimanche. Pas de jugements ni de tabous, une conversation franche mais aussi des réponses aux questions que les auditeurs se posent.Un moment d'échange et de partage propice à la confidence pour repartir le cœur plus léger.
Chaque soir, Olivier Delacroix vous ouvre la Libre antenne. Pas de jugements ni de tabous, une conversation franche mais aussi des réponses aux questions que les auditeurs se posent. Un moment d'échange et de partage propice à la confidence pour repartir le cœur plus léger.
Dr Linda Bluestein, is a board-certified anesthesiologist and integrative medicine physician with a focus on hypermobility, Ehler-Danlos Syndromes and complex patients with chronic pain. In this brilliant exposition, she defines hypermobility, lays out the esoteric classifications of hypermobile Ehler Danlos Syndrome vs Hypermobility Spectrum Disorders and why naming matters for assessment and treatment of symptoms. Dr Bluestein then dives into practical recommendations for thinking about how connective tissue dysfunction (it's said "If you can’t connect the issues, think connective tissues”) can impact a variety of systems like the gut (constipation, prolapse, reflux, distention, gastroparesis), skin (delayed wound healing, poor scarification), dysautonomia, mast cell activation syndrome, in addition to the typical musculoskeletal conditions of dislocations, subluxations and other joint injuries. She notes, so wisely, that if we can shorten the typical diagnosis from ~25 years to, pretty much anything shorter than that, we can prevent a tremendous amount of chronic pain later in life. And then Dr Bluestein teases apart types of pain: nociceptive (meaning direct injury to tissues like from an injury), neuropathic pain (meaning dysfunction of the nerves themselves) or nociplastic pain (meaning dysfunction in how we process sensation) and the eventual progression to central sensitization syndromes, like fibromyalgia, if pain is allowed to linger. Finally, we cap off with a discussion about some selective pharmaceuticals, some common and some uncommon, and how to think about them: opioids, benzodiazepines, muscle relaxants, oxytocin, NMDA antagonists (magnesium, ketamine, memantine). Find out more: http://www.hypermobilitymd.com/ Book: Disjointed | Navigating the Diagnosis and Management of hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders which can be ordered here: https://www.amazon.com/Disjointed-Navigating-hypermobile-Ehlers-Danlos-Hypermobility/dp/1734794909/ref=pd_lpo_14_t_0/136-4762933-2366558?_encoding=UTF8&pd_rd_i=1734794909&pd_rd_r=acaa36c6-0aac-47c7-a2f3-4bd1b7ba15d7&pd_rd_w=fy7Ld&pd_rd_wg=HsWpW&pf_rd_p=7b36d496-f366-4631-94d3-61b87b52511b&pf_rd_r=RC3MY8A7KJ999FZDE4JY&psc=1&refRID=RC3MY8A7KJ999FZDE4JY
Chaque soir, Olivier Delacroix vous ouvre la Libre antenne. Pas de jugements ni de tabous, une conversation franche mais aussi des réponses aux questions que les auditeurs se posent. Un moment d'échange et de partage propice à la confidence pour repartir le cœur plus léger.
Chaque soir, Olivier Delacroix vous ouvre la Libre antenne. Pas de jugements ni de tabous, une conversation franche mais aussi des réponses aux questions que les auditeurs se posent. Un moment d'échange et de partage propice à la confidence pour repartir le cœur plus léger.
Welcome back to How Humans Heal with Dr. Doni! Have you been wondering whether you should take collagen powder? What is collagen anyway, and if you swallow it, can it really help your skin to prevent wrinkles and prevent joint pain? Collagen is an essential part of our body structure, including our skin, ligaments, tendons, bones, hair, blood vessels, and even our teeth. Type 1 collagen is the most common type of collagen in our bodies, but even still, each of us has quite unique collagen production based on our genetics, our age and our stress exposure. Those of us, like me, with Ehler’s Danlos or hypermobility have extra flexible collagen, which can lead to health issues such as joint pain. Learn more about how you can support your collagen production with diet, nutrients, and supplements. Links: Dr. Doni’s Collagen Support: https://drdonistore.com/Dr-Donis-Collagen-Support-8-oz_p_1207.html Dr. Doni approved Collagen options: https://drdonistore.com/search.asp?keyword=collagen&search= SkinTE Tea: https://drdonistore.com/SkinTe--Sparkling-Tea-Collagen_p_1044.html Connect with Dr. Doni: Website: https://doctordoni.com/ FREE 7-Day Stress Reset: https://doctordoni.com/stress-reset/ Facebook https://www.facebook.com/drdoniwilson/Instagram https://www.instagram.com/drdoniwilson/ YouTube https://www.youtube.com/user/DoniWilsonND
Did you know that Postural Orthostatic Tachycardia Syndrome used to be called irritable heart syndrome? In the first part of this two episode series, Dr Mark Donohoe returns to FX Medicine to discuss Postural Orthostatic Tachycardia Syndrome, or POTS, a condition affecting the autonomic nervous system. POTS occurs when an inadequate amount of blood returns to the heart when the patient moves from lying down to a standing position. Mark guides us through the definition and history of POTS, providing an in depth discussion of the symptoms that define the syndrome, the challenges for practitioners in alleviating those symptoms, and the connections between POTS and other conditions such as Chronic Fatigue Syndrome and Ehlers-Danlos syndrome. Find today's podcast transcript and show notes here: https://www.fxmedicine.com.au/podcast/postural-orthostatic-tachycardia-syndrome-pots-part-1-dr-mark-donohoe*****DISCLAIMER: The information provided on FX Medicine is for educational and informational purposes only. The information provided is not, nor is it intended to be, a substitute for professional advice or care. Please seek the advice of a qualified health care professional in the event something you learn here raises questions or concerns regarding your health.*****
We are often surprised by the twists and turns of life - especially when confronted with disability. Lara Bloom was surprised when she was diagnosed with Ehlers Danlos Syndrome. She was even more surprised to meet a man who helped her find her purpose - launching The Ehlers Danlos Society. Lara is president and CEO of The Ehlers Danlos Society and she is a global leader in the rare disease community. Lara has taken life's twists and surprises and turned them into a beautiful life of service to others. Join us for laughter and a conversation about what it means to build and sustain a life of advocacy.
In case one would mistake my running with a shirt off as vain or arrogant…The sun on my skin, the wind whipping around my body – the fire of the eyes of God…breath from his nostrils. In the heat of the summer with sweat dripping on the pavement every step…one foot in front of the other – forward into the heavy, stifling haze – humid and thick. I bear my cross forward for all to see. They don't see the weight on my shoulders, but I know it's there. Let them who have ears to hear, hear the message well.I woke up this morning and accepted my daily bread with grace. I forgave the ills against me and hope to also be forgiven. The pain is great but my soul is greater. Let not my will, but yours be done.And today I choose to carry my cross. I stoop with worn hands and stiff back…wrap my arms around the beam…and remember what I am fighting for. A great heave and it is, once again, upon my shoulder – rough, splintery – rubbing callous into my neck and back. This is my burden – and I choose to bear it well. I set my sights upon the hill in front of me and move. One foot in front of the other. The way is narrow and difficult. My lungs burn. My joints ache. My sinew twists, protesting every inch. I watch the path closely because even small stumbling blocks are tragic setbacks while under this much weight. Sometimes I hear the silence of the morning dew resting peacefully on God's green earth. Sometimes I feel the caress of a breeze easing my salt-soaked brow. Sometimes I see the faces of loved ones and the jeers of my enemies.Let them who have eyes to see, let them see. Not the body I've built, but the heavy cross I carry.If you found this article valuable, please share on Twitter, Facebook and InstagramKick Butt. Take Names.#DefiningDadBodThis information is meant to be actionable information to promote health and well-being and not to be used to diagnose or treat medical symptoms or conditions. ——-Support the Show (Monthly)Patreon.com/definingdadbodSupport the Show (One-time, quarterly)definingdadbod.com/innercircleGet Help With Your Program definingdadbod.com/shop/trialweekJoin The Inner Circledefiningdadbod.com/innercircleEhlers Danlos Society Publication:https://www.ehlers-danlos.com/my-awareness-mission/?fbclid=IwAR2Ku-oC-mHjUAHhsefd-7VsZGHUyz5m9fVlO2vdfmwwhZF7LzHPxRc9mJ4Become a supporter of this podcast: https://www.spreaker.com/podcast/faithful-fitness-by-better-daily--5150768/support.
In case one would mistake my running with a shirt off as vain or arrogant…The sun on my skin, the wind whipping around my body – the fire of the eyes of God…breath from his nostrils. In the heat of the summer with sweat dripping on the pavement every step…one foot in front of the other – forward into the heavy, stifling haze – humid and thick. I bear my cross forward for all to see. They don’t see the weight on my shoulders, but I know it’s there. Let them who have ears to hear, hear the message well.I woke up this morning and accepted my daily bread with grace. I forgave the ills against me and hope to also be forgiven. The pain is great but my soul is greater. Let not my will, but yours be done.And today I choose to carry my cross. I stoop with worn hands and stiff back…wrap my arms around the beam…and remember what I am fighting for. A great heave and it is, once again, upon my shoulder – rough, splintery – rubbing callous into my neck and back. This is my burden – and I choose to bear it well. I set my sights upon the hill in front of me and move. One foot in front of the other. The way is narrow and difficult. My lungs burn. My joints ache. My sinew twists, protesting every inch. I watch the path closely because even small stumbling blocks are tragic setbacks while under this much weight. Sometimes I hear the silence of the morning dew resting peacefully on God’s green earth. Sometimes I feel the caress of a breeze easing my salt-soaked brow. Sometimes I see the faces of loved ones and the jeers of my enemies.Let them who have eyes to see, let them see. Not the body I’ve built, but the heavy cross I carry.If you found this article valuable, please share on Twitter, Facebook and InstagramKick Butt. Take Names.#DefiningDadBodThis information is meant to be actionable information to promote health and well-being and not to be used to diagnose or treat medical symptoms or conditions. ——-Support the Show (Monthly)Patreon.com/definingdadbodSupport the Show (One-time, quarterly)definingdadbod.com/innercircleGet Help With Your Program definingdadbod.com/shop/trialweekJoin The Inner Circledefiningdadbod.com/innercircleEhlers Danlos Society Publication:https://www.ehlers-danlos.com/my-awareness-mission/?fbclid=IwAR2Ku-oC-mHjUAHhsefd-7VsZGHUyz5m9fVlO2vdfmwwhZF7LzHPxRc9mJ4
In case one would mistake my running with a shirt off as vain or arrogant…The sun on my skin, the wind whipping around my body – the fire of the eyes of God…breath from his nostrils. In the heat of the summer with sweat dripping on the pavement every step…one foot in front of the other – forward into the heavy, stifling haze – humid and thick. I bear my cross forward for all to see. They don’t see the weight on my shoulders, but I know it’s there. Let them who have ears to hear, hear the message well.I woke up this morning and accepted my daily bread with grace. I forgave the ills against me and hope to also be forgiven. The pain is great but my soul is greater. Let not my will, but yours be done.And today I choose to carry my cross. I stoop with worn hands and stiff back…wrap my arms around the beam…and remember what I am fighting for. A great heave and it is, once again, upon my shoulder – rough, splintery – rubbing callous into my neck and back. This is my burden – and I choose to bear it well. I set my sights upon the hill in front of me and move. One foot in front of the other. The way is narrow and difficult. My lungs burn. My joints ache. My sinew twists, protesting every inch. I watch the path closely because even small stumbling blocks are tragic setbacks while under this much weight. Sometimes I hear the silence of the morning dew resting peacefully on God’s green earth. Sometimes I feel the caress of a breeze easing my salt-soaked brow. Sometimes I see the faces of loved ones and the jeers of my enemies.Let them who have eyes to see, let them see. Not the body I’ve built, but the heavy cross I carry.If you found this article valuable, please share on Twitter, Facebook and InstagramKick Butt. Take Names.#DefiningDadBodThis information is meant to be actionable information to promote health and well-being and not to be used to diagnose or treat medical symptoms or conditions. ——-Support the Show (Monthly)Patreon.com/definingdadbodSupport the Show (One-time, quarterly)definingdadbod.com/innercircleGet Help With Your Program definingdadbod.com/shop/trialweekJoin The Inner Circledefiningdadbod.com/innercircleEhlers Danlos Society Publication:https://www.ehlers-danlos.com/my-awareness-mission/?fbclid=IwAR2Ku-oC-mHjUAHhsefd-7VsZGHUyz5m9fVlO2vdfmwwhZF7LzHPxRc9mJ4
Having a physical disability can make menstruation a lot more difficult. On today's show, three disabled menstruators share their stories and solutions. Writer, podcaster and disability advocate Kerry Kijewski tells us about having irregular periods while blind; journalist and podcaster Win Charles, who has cerebral palsy, shares how she finally got her “heavy ass” periods under control; and entrepreneur Jane Hartman Adamé describes how she designed a period product for all types of bodies.
Podcast with Dr. Pat Jonas: Ehlers Danlos Syndrome - A Painful Surprise for Family Physicians
Anomie Fatale (Musician/Artist/Disability Advocate) joins the boys for a very special episode. They discuss Anomie's medical condition, becoming physically disabled, lyin' ass doctors, suicide, fate, bird hostages...we talk about a lot. Find @AnomieFatale on Facebook Twitter and Instagram under her name and under her band name, Great Neck. Find the songs from today's episode at greatneck.bandcamp.com and youtube.com/greatneckband . See her and Great Neck play live at Philly's Disability Pride Rally, June 15th, at City Hall. Follow Magical Misery Tour Podcast on Facebook, @MagicMiseryTour on Twitter, @JesseDraham , @NeilWoodComedy
Ehlers-Danlos Syndrome (EDS) is so much more than just a curious double-jointed ability…so much more! Imagine your limbs giving way as you run, jump, and play. Imagine your developing teeth dislodging from their sockets. Imagine the connective tissue structure of your bladder, your skin, even the integrity of your cardiovascular and digestive system constantly being compromised. This is what Cindy Kennedy will take us through today, as she discusses both her professional and personal journey as a naturopath and mother of a child with EDS. Cindy shares the various diet, lifestyle, nutritional and herbal therapies which she has found clinically successful in improving the quality of life for those facing this confronting connective tissue disorder. Find today's episode and show notes here: https://www.fxmedicine.com.au/content/ehlers-danlos-syndrome-cindy-kennedy **Please note, there is no transcript available for this episode. *****DISCLAIMER: The information provided on FX Medicine is for educational and informational purposes only. The information provided is not, nor is it intended to be, a substitute for professional advice or care. Please seek the advice of a qualified health care professional in the event something you learn here raises questions or concerns regarding your health.*****
Today I'm sitting down with one of my Patrons, Brandi Lee, to talk about (among other things) parenting with a chronic illness. Brandi has Ehlers Danlos Syndrome, as do two of her kids. I could commiserate so much on so many things she was saying, while also learning from her experience. I bet you will too! This episode is sponsored by my Patrons. Learn more by checking out my Patron Page! FIND BRANDI: Facebook: https://www.facebook.com/MamaZebrax2/ Instagram: https://www.instagram.com/creatingboldlee/ FIND ME: My Website Instagram YouTube Facebook Group MUSIC: Bright Wish by Kevin MacLeod is licensed under a Creative Commons Attribution license (https://creativecommons.org/licenses/by/4.0/) Source: http://incompetech.com/music/royalty-free/index.html?isrc=USUAN1100377 Artist: http://incompetech.com/
On this episode of the Healthy Wealthy and Smart Podcast, I welcome Dr. Secili DeStefano, PT, DPT on the show to discuss the International Pelvic Pain Society and the importance of mentorship. Secili received her Master’s (2001) and Doctorate (2007) degrees in physical therapy from Marymount University. Secili administers premium care to a large, diverse population of outpatient orthopedic patients. She has a special interest in rehabilitating the biomechanics including the ribs, spine, hips and pelvis. In this episode, we discuss: -Secili’s highlights from the International Pelvic Pain Society -Why you should seek mentorship opportunities at conferences -The most important traits a mentor should possess -What qualities should a mentee look for in their mentor -And so much more! “Mentorship is bilateral.” “Mentoring is just one piece of a bigger puzzle of mastery.” “Sometimes you just need that person to give you permission to change your self-talk.” “Struggle builds strength. We are all going to have struggles but in that, what opportunities are there for you to be successful in the future.” For more information on Secili: Secili received her Master’s (2001) and Doctorate (2007) degrees in physical therapy from Marymount University. Secili administers premium care to a large, diverse population of outpatient orthopedic patients. She has a special interest in rehabilitating the biomechanics including the ribs, spine, hips and pelvis. Over the past several years in practice, she has focused on preventing injuries, promoting health and wellness, and creating solutions for complex and persistent pain. Secili is a manual therapist, and performs Triggerpoint Dry Needling (TDN) and utilizes Graded Motor Imagery. She is also certified and performs a variety of different prevention and optimization programs for athletes. She uses RealTime UltraSound Imaging to assist the patients in optimizing movement and performance. Her heart for patients locally, nationally and internationally leads her to foster research, speak, and consult on a wide variety of healthcare topics. Secili also provides care for men’s and women’s pelvic health (bowel, bladder, sexual dysfunction and incontinence), conditions specific to athletes, breast health, pre-partum, pregnancy, post-partum, bone health, osteoporosis and osteopenia, persistent pain (fibromyalgia, chronic fatigue and other widespread chronic pain syndromes), postsurgical health and restoration (e.g. post-hysterectomy, C-section, post-prostatectomy, etc.), hypermobility syndromes (e.g., Ehler’s Danlos), pelvic, back, hip and sacroiliac joint pain and dysfunction (e.g., Femoral Acetabular Impingement). She assesses and fabricates custom orthotics; evaluates and consults area businesses on worksite ergonomics; and provides health, wellness, consulting and screening services to area athletic programs, travel teams, and specialty programs including Olympic hopefuls, high level football players, dancers, swimmers and soccer players. Secili is committed to optimizing patients’ movement and performance. Secili has received numerous professional awards and certifications resulting from her work experience, continuing education pursuits and her involvement in her professional associations. She serves on many national task forces and work groups for improving health care. Currently, she is serving on the American Physical Therapy Association (APTA) NEXT Conference Work Group and APTA She has served as the Virginia Physical Therapy Association Vice President and Delegate to the APTA House of Delegates. She has served as the Director of Research for the APTA Section on Women’s Health. Secili is a Certified Direct Access Practitioner, which means that she is able to practice without a referral from another practitioner. She has received the distinction of Certified Orthopedic Specialist and Emerging Leader from the APTA. Secili has served as a Center Coordinator of Clinical Education and is a Certified Clinical Instructor. She has also been honored as a Distinguished Commencement Speaker. She is currently teaching at George Mason University in their Department of Health Administration and Policy. Her first year as a Mason professor, she was nominated by the students for the Career Connection Faculty Award. Prior to her career as a physical therapist, Secili worked as a student athletic trainer in the University of Texas athletic department. Secili has her own decorated past in sports including Go Ruck, Spartan Races, marathons, weight lifting, dancing, swimming and gymnastics. She enjoys spending time with her husband, two children, friends and extended family, as well as, traveling and reading. Resources discussed on this show: International Pelvic Pain Society Secili DeStefano Twitter Bodies in Motion PT Website Thanks for listening and subscribing to the podcast! Make sure to connect with me on twitter, instagram and facebook to stay updated on all of the latest! Show your support for the show by leaving a rating and review on iTunes! Have a great week and stay Healthy Wealthy and Smart! Xo Karen
What's holding you back?Do you wake up every morning thankful for the world around you? Are you making the most out of the opportunities at hand? Are you truly adopting the best mindset you could in your life, your health, and your fitness?Meet Brian - a man who despite his years diagnosed with Ehler's Danlos, Testicular Cancer, ADHD, Dyslexia, Aspergers, and now Multiple Sclerosis is not curled up in a fetal position suffering needlessly every day. Instead Brian has devoted his life to helping others face their journey and obstacles therein with joy, grace, and a stubborn will to make suffering "background noise". Join me while we dive into some of the keys to growing beyond your current limits! Support the show! www.patreon.com/definingdadbodConnect with Brianwww.facebook.com/brianrkingmswThank you for listening, subscribing, and reviewing!Become a supporter of this podcast: https://www.spreaker.com/podcast/faithful-fitness-by-better-daily--5150768/support.
What's holding you back?Do you wake up every morning thankful for the world around you? Are you making the most out of the opportunities at hand? Are you truly adopting the best mindset you could in your life, your health, and your fitness?Meet Brian - a man who despite his years diagnosed with Ehler's Danlos, Testicular Cancer, ADHD, Dyslexia, Aspergers, and now Multiple Sclerosis is not curled up in a fetal position suffering needlessly every day. Instead Brian has devoted his life to helping others face their journey and obstacles therein with joy, grace, and a stubborn will to make suffering "background noise". Join me while we dive into some of the keys to growing beyond your current limits! Support the show! www.patreon.com/definingdadbodConnect with Brianwww.facebook.com/brianrkingmswThank you for listening, subscribing, and reviewing!
Transcript is below pic. Season 1 Episode 8 Ehlers Danlos Syndrome In this episode we interview one of our PodcastDX co-hosts, Jean Marie. As you remember, she also discussed one of her EDS co-morbidity disorders (POTS) in a recent episode. Today we ask Jean to share a little more detail of her Ehlers Danlos Syndrome and how that ties in to her complex medical diagnosis. EDS is more than just being "really flexible" as you will soon learn. TRANSCRIPT Ron: [00:00:30] Hello and welcome to another episode of podcast DMX. The show that brings you interviews with people just like you whose lives were forever changed by a medical diagnosis. [00:00:40][10.4] Lita: [00:00:41] I'm Lita. [00:00:42][0.2] Ron: [00:00:43] I'm Ron. [00:00:43][0.2] Jean: [00:00:44] And I'm the guinea pig. [00:00:45][1.0] Lita: [00:00:47] Collectively we are the hosts of podcast D X this podcast is not intended to be a substitute for a professional medical advice diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition or a treatment. And before undertaking a new health care regimen and never just regard professional medical advice or delay in seeking it because of something you have heard on this podcast. [00:01:16][29.6] Jean: [00:01:18] Now on future episodes we have many interesting people to speak with about a wide variety of different medical conditions and diagnoses but in this episode we will be discussing a rare set of disorders that fall under the category of Ehlers Danlos syndrome which we will abbreviate from this point forward as E D S. [00:01:39][20.9] Ron: [00:01:41] E D S or a group of connective tissue disorders that can be inherited and are varied both in how they affect the body and in their genetic causes. They are generally characterized by joint hyper mobility that is joints that stretched further than normal, skin hyperextensibility. Again, skin that can be stretched further than normal, and tissue fragility. There are 13 subtypes, each one being diagnosed through genetic testing. The hyper mobile type does not have a genetic marker identified just yet. This type is diagnosed by a physician using something called the Beighton Scale, which includes a variety of tests to give reference to the amount of hyper mobility involved in the patient. The connective tissue of a person with EDS is not structured the way it should be. Some or all of the tissue in the EDS affected body can be pulled beyond normal limits which causes damage connective tissue can be found almost anywhere. It can be found in the skin the muscles tendons in the ligament the blood vessels the organs in the gums the eyes and so on you get the picture. [00:02:58][77.6] Lita: [00:02:59] That's right. Run. I bet you got that right off the EDS Society website. [00:03:03][4.1] Ron: [00:03:04] Was it that obvious? I wanted to make sure that we were giving the most accurate definition to the listeners out there. The link for EDS Web site along with more detailed information regarding EDS can be found on our Web site PodcastD X dot com. [00:03:21][16.9] Lita: [00:03:22] Well now that we know the definition of EDS, I guess it's time to point out the actual symptoms that a person with us experiences. The first is typically joint hyper mobility loose or unstable joints which are prone to frequent dislocations and or a subluxations, joint pain, hyper extensible joints., (they move beyond the joints normal range) and early onset of osteoarthritis. [00:03:52][30.1] Ron: [00:03:55] Lita, what's the difference between a dislocation and subluxation. [00:03:57][2.2] Lita: [00:03:59] Well a dislocation is defined as the separation of a human body's two bones from a joint or area where the two bones come together. In time, if treated incorrectly. It can lead to ligament or nerve damage, which will hinder the patient's body movements. A partial dislocation is referred to at times as a subluxation. This is the result of an incomplete separation of the bones that come together at the joints. [00:04:28][29.1] Ron: [00:04:30] Wow. Either way they both some pretty painful. [00:04:32][1.9] Lita: [00:04:32] They sure do. Pain is a huge problem with EDS. It can also turn into a chronic early onset debilitating musc, musculoskeletal pain similar to fibromyalgia. Another common issue with EDS is a skin related problems. It's very common to have fragile skin that tears or bruises easily, bruising may be severe. Severe scarring, slow and poor wound healing, even following a surgery, scars can reopen after you think they were healed. Other problems can occur within the body due to lack of collagen and or ligaments support. Things like frequent hernias, digestive problems, mitral valve prolapse, scoliosis, uterine fragility, and gum disease. [00:05:24][51.8] Ron: [00:05:26] That certainly is an incredible array of symptoms. And this disorder is not curable but it is managed with medication physical therapy and rest. So now that we have laid some of the background for our listeners at home it is time to introduce today's guest who unfortunately deals with EDS on a daily basis. Our own co-host here podcastDx, Jean Marie. Could you please explain a little bit about your journey with EDS?. [00:06:00][33.8] Jean: [00:06:01] Sure. I didn't know what it was but I've been, but I knew that I had some issues with my joints stability and such for some time. When I was little, I was always very "bendy" and my hip will go out of joint just walking and my shoulders would come out of joint several times, and I've had some other issues but I've had some severe problems with it as well, but most of my issues were later in life. [00:06:30][29.2] Ron: [00:06:32] So the first symptoms that when you were much younger you said about your hip. [00:06:37][5.3] Jean: [00:06:38] Well I would say that although I recognize that there was something going on I didn't understand what. How complex and difficult the situation was and that I had EDS until much later in life, in my 30s. [00:06:52][14.3] Lita: [00:06:53] Is it common for people with EDS to get a diagnosis of fibromyalgia. [00:06:57][3.3] Jean: [00:06:58] Sure. I mean you have joint issues and joint pain is often common in eds. So you may be diagnosed with fibromyalgia but it's actually a connective tissue issue when it comes to eds and you could also have an issue with your vascular system which is a subset of eds. [00:07:18][19.5] Lita: [00:07:18] Okay. And how do gastrointestinal problems. Irritable bowel or Gerd. How do those play a part with EDS? [00:07:27][8.2] Jean: [00:07:27] Well since your gastrointestinal system is comprised of connective tissue it can be affected by eds. So in your nerves are also surrounded by connective tissue. So since your gastrointestinal system works on a umm [00:07:43][16.0] Lita: [00:07:49] The pulsing of the muscles that move the product through the gastro system right? [00:07:55][6.0] Jean: [00:07:55] Right. That's all influenced by your nerves. And it's not something that you can control. It's an autonomic function and it's controlled by your nerve. So if your nerves are affected by your eds then your gastrointestinal symptoms are affected by that as well. And did I mention brain fog. I think brain fog is a part of eds. [00:08:13][17.7] Lita: [00:08:13] yes I know I know. [00:08:14][1.0] Ron: [00:08:16] Well I know your symptoms have changed over the years. This is based on surgery's medication changes etc. etc.. How would you say that eds affects your lifestyle right now. [00:08:27][11.6] Jean: [00:08:28] Well I have to make different modifications and accommodations for eds. Yes I have to take into account that my. For example I my hip might come out of joint and I do utilize different. Things to try to reduce the number of incidents I have. [00:08:45][16.7] Lita: [00:08:46] OK. Well since this is you know this is EDs Awareness Month as you know. Are you up for that EDs challenge that they've been talking about. [00:08:54][8.1] Jean: [00:08:55] Nope [00:08:55][0.0] Lita: [00:08:58] (laughter) Good. Let's do a lightning round. I'll ask the questions and you'll have 15 seconds to answer before I go on to the next one. [00:09:04][6.4] Jean: [00:09:05] Great. [00:09:05][0.0] Lita: [00:09:05] . Ron you'll keep time. You're ready. [00:09:07][1.9] Ron: [00:09:08] I Certainly am. whenever You're ready. [00:09:09][0.9] Lita: [00:09:10] Jean said she's not ready. [00:09:11][1.5] Ron: [00:09:12] Well you're ready Ready or not. [00:09:13][0.9] Lita: [00:09:13] That's right. OK. Question 1 What type do you have. [00:09:17][3.5] Jean: [00:09:17] Hyper mobile. [00:09:18][0.3] Lita: [00:09:19] And when were you diagnosed. [00:09:19][0.8] Jean: [00:09:20] Several years ago before my cranial cervical fusion in New York. [00:09:23][3.1] Lita: [00:09:25] OK. Do you have any comorbilities. [00:09:26][1.4] Jean: [00:09:28] Yes I have pots which we discussed on a prior episode. I get migraines. I have several hernias. I have an issue with my gastro parasen, paracentesis there say that three times fast. I have thyroid disorders tinitis in my ears cranial cervical settling and cranial cervical instability which has been repaired with a number of different titanium accessories, syncope is lipo edema, latex sensitivity I get PVCs with my heart. Now I have celiac disease and I have difficulty swallowing just to name a couple of related issues. [00:10:05][37.7] Lita: [00:10:06] Hey Ron I think we have a client here that we can use for a lot of future podcasts [00:10:10][4.1] Jean: [00:10:11] Oh no no no no. There are many other people that want to get on the show. [00:10:14][3.3] Lita: [00:10:14] OK. All right. Question number four do you have any mobility aids that you use. [00:10:20][6.0] Jean: [00:10:21] I do. There are some are unusual but it's difficult. For example for me to squeeze a bottle. So when it comes to toiletry products and things of that nature I use a pump. [00:10:31][9.7] Lita: [00:10:31] OK. [00:10:31][0.0] Jean: [00:10:32] Because that makes it my life much easier and I join up to worry about my fingers going out of joint. I also make sure that I you know I have trecking polls to assist when I'm walking and if need be I also use a wheelchair when I know when that comes. [00:10:46][14.6] Lita: [00:10:48] To much walk. [00:10:48][0.5] Jean: [00:10:49] And yet when walking becomes too much I wear very comfortable shoes that offer a great deal of support. And I just try to take it easy and rest. [00:10:58][9.5] Lita: [00:10:59] OK. What do you use for pain management. [00:11:01][2.1] Jean: [00:11:02] Anything I can. I've taken everything from fentanyl to oxycodone and I have recently submitted my application for medical marijuana for the state of Illinois. So I'm looking forward, looking forward to trying that as well. And then I also use things like distraction music. I'll read books listen you know watch movies spend time with my family spend time in the garden and I try to you know alleviate my pain through other techniques as well. [00:11:33][30.7] Lita: [00:11:34] And pet therapy. [00:11:34][0.8] Jean: [00:11:35] And pet therapy yes. [00:11:36][0.6] Lita: [00:11:36] Can't forget Buddy and Gi.Gi.. [00:11:37][1.0] Jean: [00:11:38] Nope. [00:11:38][0.0] Lita: [00:11:39] Have you had any surgeries do to eds. [00:11:41][1.8] Jean: [00:11:41] Yes yes. My , when walking my ankle. the tendons and ligaments tore off my ankle. So they had to be repaired. And I have not yet had my other ankle repaired but there is a similar situation there. And I also had a cranial cervical stabilization procedure to try to keep my neck stretched to its full full height. And it added a nice little inch to my height. [00:12:08][27.0] Lita: [00:12:09] OK. Have you had any hospital stays. [00:12:11][1.9] Jean: [00:12:11] Yep. One or two variety of reasons. [00:12:14][2.5] Lita: [00:12:14] What types of specialists do you have. [00:12:16][1.5] Jean: [00:12:17] I have a specialist for everything from my vision. So I have a neuro ophthalmologist straight down to my toes and I have an orthopedist that works specifically on ankle repairs. [00:12:31][14.1] Lita: [00:12:32] OK. What is your funniest EDS story. [00:12:34][2.8] Jean: [00:12:35] Before I knew I had eds I would entertain people by moving my hair around and it looks like it's a wig because I can move it so much because of the flexibility. So it's a little bit unusual. [00:12:46][10.4] Lita: [00:12:47] Mm hmm. Excuse me. What was your worst doctors experience. [00:12:51][4.1] Jean: [00:12:52] I had an orthopaedic surgeon told me that my shoulder blade was fine because I hadn't fractured my clavicle which I didn't realize in order to hurt your shoulder blade. You have to fracture clavicle but I don't think that's the case. And indeed I needed extensive repair to my shoulder blade and had to have two major procedures for that. [00:13:11][19.0] Lita: [00:13:11] Okay. And what was your best doctors experience. [00:13:14][2.6] Jean: [00:13:14] I have amazing GP's that juggle all of the specialists that I have and they're able to consolidate everything and handle all of my new and unusual conditions. [00:13:29][14.0] Lita: [00:13:30] OK so you say the gps would be the best. [00:13:32][1.9] Lita: [00:13:33] Yes. OK. Do you consider your she's doing pretty good on time. [00:13:36][2.8] Ron: [00:13:36] She is. [00:13:36][0.3] Lita: [00:13:37] Do you consider yourself. [00:13:37][0.6] Jean: [00:13:38] Since I forgot where I put my my notes. This must be an off the cuff. Yeah. Yeah. [00:13:43][5.0] Lita: [00:13:43] Do you see. Do you consider yourself disabled. [00:13:45][1.6] Jean: [00:13:46] No. No. I may be differently abled. [00:13:48][2.3] Lita: [00:13:49] Have you experienced ableism. [00:13:50][1.5] Jean: [00:13:52] is that like Cain and Abel ism or. I don't know what it was. [00:13:55][3.2] Lita: [00:13:55] This was one of the questions on the I'm assuming a challenge. [00:13:58][2.6] Jean: [00:14:00] I don't know. [00:14:01][1.1] Jean: [00:14:01] I do know that when I'm sitting in using my wheelchair sometimes people don't look at me or talk to me they'll talk to whoever is assisting me at the time and I find that disconcerting and that I've had issues in certain situations where I can't speak to someone and it does because it's the desk is so high and when I'm going on a tour of a museum it's difficult because you know you're trying to see everything. It's just there's challenges in that regard but nothing too horrific. [00:14:31][29.4] Lita: [00:14:33] What is something that you wish everyone understood about eds. [00:14:36][3.6] Jean: [00:14:37] oh... About Eds. [00:14:38][0.6] Lita: [00:14:38] Yes. [00:14:38][0.0] Jean: [00:14:38] Yeah. You say because you really do have to narrow it down that you can't necessarily see what's wrong. So if I am parking in utilizing a handicapped parking place it might be because my hip has popped off the day. And you might not be able to see that because you know you can't see that and you can't see other issues. But I do need assistance from now, you know every now and again and. Yeah. So just you can't always see what's going on with somebody. [00:15:04][26.1] Lita: [00:15:05] So it's an invisible illness. [00:15:06][1.0] Jean: [00:15:06] It can be. It can also be a very visible illness because I do have quite a few scars. And it takes me a very long time to heal. So in that regard you can see it. But yeah most of the time you cant tell what's going on. [00:15:18][11.3] Ron: [00:15:18] From the naked eye if people don't get you in a wheelchair they think you're fine. [00:15:21][2.9] Jean: [00:15:21] Yes. Yes and I could very well be passing out or having a syncapal episode at any moment and that's very frightening. [00:15:29][8.0] Lita: [00:15:31] True true it scares the heck out of me I know. [00:15:33][2.5] Lita: [00:15:34] Sorry Mom. Yeah. Yeah. If you could rid yourself of one EDs symptom which would it be. [00:15:40][5.9] Jean: [00:15:42] I guess the gastrointestinal complications I've been told that I should really have my colon removed and that's not something I'm jumping for joy about so certainly I'd want that corrected. And I guess any of the. [00:15:55][13.3] Lita: [00:15:56] No one one, you see how, she's that, now she's losing the trick. [00:15:59][3.5] Jean: [00:16:00] Well yeah. All right all right. Any. But yeah. OK. [00:16:02][2.6] Lita: [00:16:03] Just one. Well that wraps up today's session. If you have any questions or comments related to today's show you can contact us at podcast D X at yahoo dot com through our Web site podcast D X dot com at our Facebook page at Instagram or Twitter. [00:16:22][18.8] Ron: [00:16:23] And if you have a moment to spare please give us a five star review on I tunes podcast app. [00:16:29][5.6] Jean: [00:16:30] And thank you to all of our followers on Instagram. We really appreciate the feedback. And on Facebook I love all the feedback there as well. And the Twitter followers too, have to give you guys a shout out into all of our other podcasters out there who have given us praise and assistance and encouragement. We appreciate you guys. [00:16:49][19.5] Lita: [00:16:49] Yes we are. We're. moving... (forward) [00:16:49][0.0] [887.2]
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