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
💬 Comment: What's one thing you wish your doctor actually understood about your condition?
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?
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!
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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
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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
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