How Ehlers Danlos Syndrome Affects My Life

My heart goes out to all my fellow Spoonies ❤

Resources:
List of EDS doctors by country and state: https://www.ehlers-danlos.com/healthc...
The BEST video to understand EDS, MCAS, & POTS: Connecting the Dots with EDS in Manag...
Compression socks: https://sockwellusa.com/products/wome...
SI belt: https://rstyle.me/+JnBBJuZvzE2NThc4_C...
DAO enzyme: https://rstyle.me/+WcIKLw7uvD5aLjQytY...
“The Most Common Disease You’ve Never Heard Of” (Podcast featuring researchers finding the genetic marker for hEDS): https://open.spotify.com/episode/2RPo...
The 4-Phase Histamine Reset Plan: Getting to the Root of Migraines, Eczema, Vertigo, Allergies and More: https://rstyle.me/+Cpj6jIY7VZ97RVmMCz...
Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexityhttps://rstyle.me/+S08Lhs75kXSTNd2dcI...
The Spoon Theory: https://ehlersdanlosnews.com/health-i...

Timestamps:
00:00 Intro
00:30 Goals for the video
01:21 Thank you
04:08 Hypermobile Ehlers Danlos Syndrome (hEDS)
05:17 How they diagnose hEDS
06:43 hEDS genetic test is coming!
07:14 Mast Cell Activation Syndrome (MCAS)
08:10 How EDS triggers MCAS
08:37 Postural Orthostatic Tachycardia Syndrome (POTS)
09:06 How MCAS, EDS, and POTS are connected
09:43 List of my personal symptoms
11:27 Beginning of my story
11:49 Early symptoms: asthma, allergies, insomnia, sensitivity to light and sound
13:13 Early symptoms: TMJ
13:33 College symptoms: weak immune system
14:17 College symptoms: pain & GI problems
14:36 Worsening insomnia
15:00 Back pain in the service industry
15:47 20’s hip pain, clicking, and sticking
16:07 Hilarious videos of me after surgery
16:55 Traumatic fainting from POTS
18:11 Funny POTS story
19:30 Back injury
24:43 Struggling w/ internalized ableism & shame
25:39 How my social life is affected
36:33 Emotions: validation and hope
37:55 Emotions: grief
40:02 Emotions: fear
40:34 Kids & IVF
41:41 The spoon theory
42:39 Treatment plan
46:24 Outro

Music: Epidemic Sound

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FTC: This video is not sponsored. Some product links are affiliate links that allow me to earn a small commission through your purchase. Some products were received in PR. This video is not meant for children

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