How Research is Changing the Future for Chronic Illness Patients (ft. Cortney Gensemer)

This week on Calling in Sick, I'm sitting down with someone who lives this chronic illness life from both sides of the equation. Cortney Gensemer, PhD is a scientist at ChronicleBio, a patient with hypermobile Ehlers-Danlos Syndrome, MCAS, POTS, and adrenal insufficiency, and the creator behind @CortDoesScience, and she is not holding back. This week we're diving into: 🔬 What it's actually like to study your own disease 🩺 The challenges of specialized care and diagnosis for the chronic illness population 🧬 How "omics" research is what’s connecting the dots across chronic illnesses to move beyond labels and actually find answers 💊 Our hot takes on if: diagnostic labels 100% helpful, wellness culture is actually toxic, patients are more informed than their providers, and so much more xx, Alex 💬 Comment: What's one thing you wish your doctor actually understood about your condition? TIMESTAMPS Intro: 00:00:00 Welcome back to Calling in Sick! 00:04:48 Alex’s Picks of the Week (Abercrombie, Rag & Bone, MOTHER Denim) My chat with Cortney Gensemer: 00:02:50 Cortney's journey: From athlete to patient to scientist 00:09:36 What researching her own disease did for her identity and diagnosis journey 00:23:25 What being a patient and scientist is like 00:26:23 Starting @CortDoesScience" on social media 00:30:34 Developing patient-science training and lab accessibility 00:37:07 Transitioning to biotech at ChronicleBio Chronic Illness Hot Takes: 00:47:04 Are diagnostic labels meaningless? 00:49:51 Should patients read primary literature? 00:54:41 Is it the doctor's fault if they don't understand your condition? 00:56:47 Is social media harmful or helpful for our community? 01:01:51 How should we be evaluating the wellness industry? Conclusion: 01:14:04 One Brain Cell Show: Love is Blind, Working Moms, I'm Sorry 01:18:20 Where to connect with Cortney Gensemer 01:20:01 Thank you for listening! ---------------------------------------------------------------- Stay connected and follow us on socials for more! • Instagram - https://www.instagram.com/callinginsickpod/ • TikTok - https://www.tiktok.com/@callinginsickpod • Facebook - https://www.facebook.com/profile.php?id=61558234607568 • Substack - https://substack.com/@callinginsickpod? Connect with our guest: Cortney Gensemer! • Instagram - https://www.instagram.com/cortdoesscience/ • Substack - https://cortneygensemer.substack.com/ • Website - cortneygensemer.com 🔗 If you have a complex chronic illness, check out Chronicle Connect and patient participation opportunities at chroniclebio.com ---------------------------------------------------------------- Powered by: Just Media House -- https://www.justmediahouse.com/ Produced by: Alexandra Wildeson — https://www.instagram.com/alexandrawildeson/ Alex’s Picks of the Week: Things that have been helping my chronic illness — and now my first trimester too!! ✨Salonpas Lidocaine Pain Patches — https://amzn.to/3P6rAON ✨Momcozy Pregnancy Pillow — https://amzn.to/4nEIlgZ #ChronicIllnessResearch #hEDS #EhlersDanlosSyndrome #POTS #MCAS #MastCellActivation #ChronicIllness #SpoonieLife #InvisibleIllness #AutoimmuneDisease #PatientAdvocacy #CortDoesScience #ChronicleBio #ChronicIllnessCommunity #MedicalGaslighting #PatientScientist #Omics #ChronicPain #CallingInSickPodcast #AlexWildeson Learn more about your ad choices. Visit megaphone.fm/adchoices