Navigating the Healthcare System

Happy Healthy Skin Month

The American Academy of Dermatology is calling November "National Healthy Skin Month"; we're celebrating by talking everything EDS, mast cells and healthy skin! Resources: Skin Features of EDS [https://www.ehlers-danlos.com/skin/] Mast Cell Skin Features [https://tmsforacure.org/visual-guide-to-skin-lesions/] Mast Cell Biopsies [https://www.aaaai.org/Aaaai/media/Media-Library-PDFs/Allergist%20Resources/Statements%20and%20Practice%20Parameters/Mast-cells-and-eosinophils-on-tissue-biopsies-Work-Group-Report.pdf]

Navigating the Healthcare System

This week I share more of my story with tips for navigating our complex, inefficient, and, sometimes ineffective healthcare system with the hopes of encouraging those like me struggling through this process. Above all else I hope to get the message across that a bad appointment, a bad provider, a disappointment does not mean that you will not receive the answers and treatment that you need! I encourage you to keep on keeping on, things can get better. EDS Providers Directory [https://www.ehlers-danlos.com/healthcare-professionals-directory/] Mast Cell Providers [https://tmsforacure.org/find-a-physician/]

Running with EDS

This week on the podcast we talk running with Ehlers Danlos Syndrome! I share a brief overview of my personal experiences from my twenty years of running and racing. I also offer advice based on those experiences that are relevant to those running with EDS or other health issues, as well as beginning runners in general. Educational Resources: Chi Running [https://www.amazon.com/ChiRunning-Revolutionary-Approach-Effortless-Injury-Free/dp/1416549447/ref=sr_1_1?crid=1ETX6A68QML2F&dib=eyJ2IjoiMSJ9.0bjSqI7iuA7wD7-Le2Da8f_1Q0eCydF1SyMlF8weLSpBV441XrZzuiGC5Z_-GXqzjg7hU1wjPoxSviU6uM4dxoLUsskbvDoYHSVzj6MEKCO3eTgxTi4Ckwo8svGyPD9rNlHChHCwq9oqa86cSBhFxRF8sPFAvxduvb0RBwYA-ea3Q2EN15pKCjW_K-RC6GeXwfY-mrbtWHTI4rMGBjo3h7_mpCyFjby4nTr67mnYAWI.iwYt6lW9pOtT04SfCWOEz2OjdlHH7xJPKYk4zsnNAjM&dib_tag=se&keywords=chi+running&qid=1730669677&sprefix=chi+running%2Caps%2C156&sr=8-1⁠] Exercise and POTS [https://pmc.ncbi.nlm.nih.gov/articles/PMC6289756/⁠] ⁠Aerobic Exercise and Pain Relief [https://pmc.ncbi.nlm.nih.gov/articles/PMC9677918/⁠] PT and EDS [https://www.ehlers-danlos.org/information/physical-therapy-for-hypermobility/] OT and EDS [⁠https://www.ehlers-danlos.com/occupational-therapy/] ⁠Great Resource for PT and Hypermobility [https://www.thefibroguy.com/resources/hypermobility-rehab/⁠] Common Running Injuries [https://www.webmd.com/fitness-exercise/running-injuries-causes-prevention-treatment⁠] Run Prehab Exercises [https://www.runnersworld.com/uk/training/g775692/21-essential-running-prehab-moves/⁠] ⁠Mast Cell-mediated Inflammation and Delayed Wound Healing⁠ [https://pmc.ncbi.nlm.nih.gov/articles/PMC4115062/⁠] Run Recovery Tips [https://stories.strava.com/articles/top-10-recovery-tips-for-runners⁠] Drills for Running Form [https://www.trainingpeaks.com/blog/drills-for-proper-running-form/⁠] Zone 2 Cardio [https://www.trainingpeaks.com/blog/zone-2-training-for-endurance-athletes/] ⁠Mileage Progression - Progress mileage at half the rate if you are hypermobile! [⁠https://www.runnersworld.com/advanced/a20838835/increasing-mileage-safely/⁠ ]

ADHD

This week on the podcast we recognize October as ADHD Awareness Month. I share my experiences with ADHD and offer some tips and tricks that have worked for me. I also discuss the increased prevalence of ADHD in those with Ehlers Danlos Syndrome. I posit a possible mast cell link involving dopamine, melanin & KIT. Below are resources on these topics: Stigma & Delays in Care for ADHD [https://chadd.org/adhd-news/adhd-news-caregivers/dont-let-stigma-delay-proper-adhd-treatment-for-your-child/] ADHD & EDS [https://pmc.ncbi.nlm.nih.gov/articles/PMC7882457/] Melanin, Dopamine & Neuroimmunology [https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2023.1228530/full] Tips, Habits, & Lifestyle Changes for ADHD [https://vetmed.illinois.edu/wp-content/uploads/sites/21/2017/06/adult-adhd.pdf] Pomodoro for ADHD [https://psychcentral.com/adhd/how-to-adapt-the-pomodoro-technique-adhd] EMDR & ADHD [https://www.additudemag.com/emdr-therapy-eye-movement-desensitization-trauma-adhd/]

Dysautonomia

This week we acknowledge Dysautonomia Awareness Month and discuss the autonomic nervous system, dysautonomias, and associated problems. I go on to give updates on my health and my goals! More information: Dysautonomia [https://www.ehlers-danlos.com/dysautonomia/] Postural Orthostatic Tachycardia Syndrome [https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots] Mast Cells and Dysautonomia [https://www.annallergy.org/article/S1081-1206(23)01397-2/pdf] Ehlers Danlos and the Spine [https://www.ehlers-danlos.com/2017-eds-classification-non-experts/neurological-spinal-manifestations-ehlers-danlos-syndromes/]