EDS Unplugged

Episode 4: Movement Therapy and Support Aids with Jeannie Di Bon

Episode 4: Movement Therapy and Support Aids with Jeannie Di Bon Hosts: EDS Unplugged - Marcia Brock & Cassandra A Campbell Length: 50 mins In this episode we're so excited to be joined by Jeannie di Bon, Movement Therapist and fellow hypermobile EDS'er. As well as being a movement therapist, Jeannie is an educator, author and founder of The Zebra Club, an online platform supporting people with hypermobility and EDS globally. She developed the Integral Movement Method (IMM), an evidence-based approach that bridges rehab, Pilates and nervous system regulation to help people move with less pain, control and confidence. Jeannie is an international speaker and researcher passionate about improving care and access for the hypermobile community. RESOURCES Jeannie Di Bon website jeanniedibon.com [http://jeanniedibon.com/] Hypermobility Channel http://www.youtube.com/@JeannieDiBonHypermobility Dr. Jane Simmonds Jane Simmonds | About | University College London [https://profiles.ucl.ac.uk/17207-jane-simmonds] Dr. Leslie Russek Leslie Russek [https://webspace.clarkson.edu/~lrussek/] Ehlers-Danlos Support UK (EDS UK) The Ehlers-Danlos Support UK | UK Charity for EDS and HSD [https://www.ehlers-danlos.org/] The Ehlers-Danlos Society Home - The Ehlers Danlos Society [https://www.ehlers-danlos.com/] MEDICAL REFERENCES Mast Cell Activation Syndrome (MCAS) is a condition characterised by inappropriate and excessive release of chemical mediators from mast cells, leading to a variety of symptoms. Common symptoms include: * Allergic reactions such as hives, swelling, and difficulty breathing * Gastrointestinal issues like diarrhea and vomiting * Cardiovascular symptoms including low blood pressure * Neurological symptoms such as flushing and itching * MCAS can cause episodes that resemble anaphylaxis, but these symptoms may occur without a clear trigger. Kinesiophobia is an excessive and debilitating fear of physical movement and activity, usually stemming from a fear of re-injury or pain. It is common in chronic pain, musculoskeletal disorders, and post-surgery rehabilitation, often leading to avoidance behaviour, social isolation, and prolonged disability.

Episode 3: EDS, Medical Research & Neurodivergence

In this episode, Cassandra and Marcia speak with Jan Groh, fellow EDSer, advocate, creator of the Oh Twist blog and co-author of the EDS Toolkit. Transcript: https://www.chronicpainpartners.com/episode-3-neurodivergence/ [https://www.chronicpainpartners.com/episode-3-neurodivergence/] Links to Resources shared in this episode: OH Twist https://ohtwist.com/ [https://ohtwist.com/] X (Twitter) OhTWIST.bsky.social now too (@H2OhTwist) / X [https://x.com/H2OhTwist?ref_src=twsrc%5Etfw] FB PUBLIC OH TWIST PAGE about EDS MCAD POTS info | Facebook [https://www.facebook.com/H2OhTWIST/?ref=embed_page] Patreon Jan Groh OhTWIST author | Patreon [https://www.patreon.com/cw/JanGrohTWIST] ORGS/PROJECTS Ehlers-Danlos Support UK https://www.ehlers-danlos.org/ EDS Toolkit https://gptoolkit.ehlers-danlos.org/ [https://gptoolkit.ehlers-danlos.org/] Dr Emma Reinhold X (Twitter) https://x.com/DrEReinhold?t=E2zNEED42vobymTA5fBhWA&s=09 [https://x.com/DrEReinhold?t=E2zNEED42vobymTA5fBhWA&s=09] Medical University of South Carolina (MUSC) https://www.musc.edu/ [https://www.musc.edu/] The Ehlers Danlos Society (TEDS) https://www.ehlers-danlos.com/ [https://www.ehlers-danlos.com/] HEDGE study https://www.ehlers-danlos.com/the-hedge-study/ [https://www.ehlers-danlos.com/the-hedge-study/] Norris Lab https://www.thenorrislab.com/ [https://www.thenorrislab.com/] Kallikrein Gene Study https://www.eds.clinic/articles/norris-lab-researchers-discover-hypermobile-eds-gene [https://www.eds.clinic/articles/norris-lab-researchers-discover-hypermobile-eds-gene] Dr Byers University of Washington https://www.uwmedicine.org/bios/peter-byers [https://www.uwmedicine.org/bios/peter-byers] Mast Cell Diseases Society (TMS) tmsforacure.org [http://tmsforacure.org] Professor Rodney Grahame Prof R Graham [https://iahcentre.wordpress.com/prof-rvd-graham/] London Hypermobility Unit The London Hypermobility Unit [https://www.thelondonhypermobilityunit.co.uk/] Royal National Orthopaedic Hospital (Stanmore) Home :: Royal National Orthopaedic Hospital [https://www.rnoh.nhs.uk/] Dr Jessica Eccles https://www.bsms.ac.uk/about/contact-us/staff/dr-jessica-eccles.aspx [https://www.bsms.ac.uk/about/contact-us/staff/dr-jessica-eccles.aspx] https://youtu.be/TIFM0aa5Mxs?si=po6Gc6qX9AO9rHEU [https://youtu.be/TIFM0aa5Mxs?si=po6Gc6qX9AO9rHEU] EDS Echo project https://www.ehlers-danlos.com/echo/ [https://www.ehlers-danlos.com/echo/] Road to 2026 https://www.ehlers-danlos.com/road-to-2026 [https://www.ehlers-danlos.com/road-to-2026/] MEDICAL REFERENCES Polygenic Relating to or determined by polygenes.: "the theory of polygenic inheritance". Classical EDS A genetic connective tissue disorder characterised by skin hyperextensibility, atrophic scarring, and generalised joint hypermobility. Vascular EDS Vascular Ehlers-Danlos Syndrome (vEDS) is a rare genetic disorder characterised by fragile blood vessels and connective tissues, leading to a high risk of life-threatening complications. Osteoarthritis * Degeneration [https://www.google.com/search?sca_esv=d44b221d688bac1f&sxsrf=AE3TifME2oWKWe5g8-cTSRNs2DnxnQwTcw:1765392811231&q=degeneration&si=AMgyJEvfjzRzn-1LlmPs29qkb8mqnbKLvPi5SyU8Ugiuvz_gwcg63vzM4FnX7nH8J8wPGuki7vwzDSSrhe9krq1M3Gu9-ZC5nw1hi63AJdie3-lsOVozmqE%3D&expnd=1&sa=X&ved=2ahUKEwih7pvb2LORAxWpVEEAHVdOKX0QyecJegQIHxAQ] of joint cartilage [https://www.google.com/search?sca_esv=d44b221d688bac1f&sxsrf=AE3TifME2oWKWe5g8-cTSRNs2DnxnQwTcw:1765392811231&q=cartilage&si=AMgyJEu0vuRfTngwPFrZh1qV1iGHz29SW8WLnc5gdlBwcVxg7PG1snKhEsMi5Tp7oYUQQ_ZymNbCBpa08FmgcCcUb9Sb8znBYSY5V4wsvTRNoJSe15BYtcw%3D&expnd=1&sa=X&ved=2ahUKEwih7pvb2LORAxWpVEEAHVdOKX0QyecJegQIHxAR] and the underlying bone, most common from middle age onward. It causes pain and stiffness [https://www.google.com/search?sca_esv=d44b221d688bac1f&sxsrf=AE3TifME2oWKWe5g8-cTSRNs2DnxnQwTcw:1765392811231&q=stiffness&si=AMgyJEu0vuRfTngwPFrZh1qV1iGHO_7ZVCv7mcxzUefxN7pLlud-pXnUAnYkvgwHq4Tdp9NBUPY6piOBlBHD8_JMtQSUWhvNFlHVf3tzMvlZsWVXG1GoP0Y%3D&expnd=1&sa=X&ved=2ahUKEwih7pvb2LORAxWpVEEAHVdOKX0QyecJegQIHxAS], especially in the hip, knee, and thumb joints. Rheumatoid Arthritis A chronic autoimmune disease where the immune system mistakenly attacks the joint lining (synovium), causing painful inflammation, stiffness, and swelling, typically in hands and feet, potentially damaging bone, cartilage, and tendons, leading to deformity. Marfan Syndrome Marfan syndrome is a genetic condition that affects the body's connective tissue. Connective tissue holds all the body's cells, organs and tissue together. It also plays an important role in helping the body grow and develop properly. Osteogenesis Imperfecta Commonly known as brittle bone disease, is a group of genetic disorders characterised by bones that break easily, often from mild trauma or without any apparent cause. Arthrochalasia Ehlers-Danlos syndrome (aEDS) A heritable connective tissue disorder that causes congenital bilateral hip dislocation, generalised joint hypermobility, and joint instability. aEDS is an ultra-rare disorder that affects less than 1 in 1 million people. Autosomal-recessive The inheritance pattern for a given type of rare EDS. Assay A laboratory procedure used to qualitatively assess or quantitatively measure the presence, amount, or functional activity of a target entity (analyte) such as a protein, hormone, drug, or antibody. They are essential for diagnosing diseases, monitoring treatment effectiveness, or determining drug potency. Mast Cell Disease/Mast Cell Activation Syndrome (MCAS)/Mastocytosis Rare disorders where too many mast cells build up or become overactive, releasing excessive immune chemicals (mediators) that cause widespread symptoms like flushing, itching, hives, diarrhea, abdominal pain, headaches, and potentially life-threatening anaphylaxis, affecting skin, gut, bones, and brain due to chronic allergic-like responses. Neurodiversity Neurodiversity is an umbrella term used to describe natural differences in how individuals' brains' think and process information. The Trifecta (EDS/HSD + Mast Cell Activation + Dysautonomia) A complex cluster of chronic symptoms affecting connective tissues, immune response, and the autonomic nervous system, impacting heart rate, blood pressure, digestion, and energy. Innervation The distribution, supply, or stimulation of nerves to a specific body part, organ, or muscle, allowing it to function and receive sensory input. It defines the nerve network connection that controls actions like muscle contraction or glandular secretion through neuromuscular junctions. Familial Dysautonomia (Riley-Day syndrome or hereditary sensory and autonomic neuropathy type III (HSAN III). A rare, progressive, autosomal recessive genetic disorder that primarily affects the development and survival of sensory, sympathetic, and some parasympathetic neurons in the autonomic and sensory nervous systems.) Multiple Sclerosis (MS) A chronic autoimmune disease affecting the central nervous system (brain, spinal cord, optic nerves) where the immune system damages myelin (nerve sheaths), disrupting nerve signals and causing varied symptoms like vision problems, weakness, balance issues, and fatigue. "Multiple" refers to the many lesions/scars (sclerosis) that can form, and it's a lifelong condition with no cure, though treatments help manage it. Lupus A chronic autoimmune disease where the immune system mistakenly attacks healthy tissues and organs, causing inflammation and damage, often leading to fatigue, joint pain, skin rashes (like the butterfly rash on the face), fever, and potential issues with kidneys, heart, lungs, and blood. Sjögren's Syndrome (or disease) A chronic autoimmune disorder where the immune system attacks moisture-producing glands, primarily causing severe dry eyes (xerophthalmia) and dry mouth (xerostomia), but can also affect other organs, leading to fatigue, joint pain, and potential damage to lungs, kidneys, or nerves. It often occurs with other autoimmune diseases and is far more common in women, typically starting in middle age, with treatments focusing on symptom relief as there's no cure. Rheumatoid Arthritis (RA) A chronic autoimmune disease causing pain, swelling, and stiffness, primarily in the joints, where the immune system mistakenly attacks the body's own tissues, leading to inflammation and potential damage. It's a long-term condition that can affect many joints, especially in the hands, wrists, and feet, and may also cause systemic symptoms like fatigue. Autism Spectrum Disorder (ASD) A lifelong developmental condition affecting social communication, interaction, and behaviour, characterised by a spectrum of traits and support needs. Stims/Stimming (self-stimulatory behavior) In autism it refers to repetitive movements, sounds, or actions (like hand-flapping, rocking, humming, or fiddling with objects) that help individuals self-regulate emotions, manage sensory input, focus attention, or express feelings, acting as a natural coping mechanism for stress, anxiety, or excitement, and is generally beneficial rather than problematic, though some forms can be harmful. Everyone stims (nail-biting, hair twirling), but it's a core trait in autism, helping people process an often overwhelming sensory world and providing comfort and predictability. Cortisol A steroid hormone that your adrenal glands (the glands on top of your kidneys) make. Cortisol affects several aspects of your health and helps regulate your body's response to stress. Common Variable Immunodeficiency (CVID) The most common symptomatic primary immunodeficiency in adults, characterised by impaired antibody production due to defects in B cell differentiation and function, leading to low levels of immunoglobulins (IgG, IgA, and often IgM) and poor or absent specific antibody responses to infections or immunisations.

Episode 2: Medically Complex Children

In this episode we're so excited to be joined by Donna Sullivan, advocate and filmmaker behind the powerful documentary "Complicated." Donna's work shines a light on the lived experiences of those living with EDS and chronic pain, especially children — and she's using film as a tool for empathy and understanding. Transcript: Chronic Pain Partners [https://www.chronicpainpartners.com/episode-2-medically-complex-children/] Links to Resources shared in this episode: Donna M. Sullivan, Director, Patient Advocacy: https://linktr.ee/dmsconsulting [https://linktr.ee/dmsconsultingr] Pathways To Trust: https://www.pathwaystotrust.org Additional Board Positions: The Coalition Against Pediatric Pain https://tcapp.org [https://tcapp.org/] The Connective Tissue Coalition: www.connectivetissuecoalition.org [http://www.connectivetissuecoalition.org/] Mito Action Advocacy Support: https://www.mitoaction.org/resources-planning/medical-child-abuse/ [https://www.mitoaction.org/resources-planning/medical-child-abuse/] EDS Society Ahead Coalition: https://www.ehlers-danlos.com/ahead-coalition/ [https://www.ehlers-danlos.com/ahead-coalition/] The Do No Harm Project: https://www.thedonoharmproject.com [https://www.thedonoharmproject.com/] Open Eye Pictures: https://openeyepix.org [https://openeyepix.org/] Film "Complicated": https://openeyepix.org/complicated [https://openeyepix.org/complicated?fbclid=PAVERFWAOOuTdleHRuA2FlbQIxMABzcnRjBmFwcF9pZA8xMjQwMjQ1NzQyODc0MTQAAacePg-oDo4kDHK8_fN0oiHhp8ihPe2kpSoNlgkxA6U2B-TjwMJ4QcMf9gbHHA_aem_4jaobGSzxyl5lPuv1ucc-Q#complicated-1] FB page: https://www.facebook.com/complicatedthemovie [https://www.facebook.com/complicatedthemovie] Elevate Rare: https://elevaterare.org [https://elevaterare.org/] EDS CLINIC: https://www.eds.clinic [https://www.eds.clinic/] EDSUNPLUGGED: Linktr.ee/EDS_unplugged [http://linktr.ee/EDS_unplugged] EDS Unplugged Instagram: https://www.instagram.com/eds_unplugged [https://www.instagram.com/eds_unplugged] MEDICAL REFERENCES Dysautonomia A group of disorders characterised by malfunction of the autonomic nervous system (ANS), which controls involuntary bodily functions such as heart rate, blood pressure, digestion, temperature regulation, and bladder and bowel function. Complex Regional Pain Syndrome (CRPS) A condition characterised by persistent, severe, and debilitating pain that typically affects a single limb, often following an injury, surgery, stroke, or heart attack. Chiari Malformation A structural abnormality where part of the brain, typically the cerebellum, extends below the foramen magnum - the opening at the base of the skull - into the spinal canal. This downward displacement can cause pressure on the brainstem and spinal cord, disrupt the flow of cerebrospinal fluid (CSF), and lead to a wide range of symptoms. Jugular Vein Compression The obstruction of blood flow in the jugular vein, primarily the internal jugular vein, due to external pressure from structures in the neck.

Episode 1: Invisible Disability Awareness

We are very pleased to announce the first episode of the EDS Unplugged podcast, brought to you by Chronic Pain Partners. In this episode, hosts Cassandra and Marcia speak with Kate Schultz about what we do here at Chronic Pain Partners and living with EDS in the run up to Invisible Disabilities Week. www.chronicpainpartners.com [https://www.chronicpainpartners.com] Episode Transcript: https://www.chronicpainpartners.com/eds-unplugged-podcast-episode-1-invisible-disabilities-awareness-with-kate-schultz/ [https://www.chronicpainpartners.com/eds-unplugged-podcast-episode-1-invisible-disabilities-awareness-with-kate-schultz/]