My Symptoms of EDS (Ehlers Danlos Syndrome) from Childhood to Now.

Published 2023-05-26
hey guys, hope you're hanging in there, for Ehlers Danlos Syndrome Awareness Month I thought I would share my symptoms of EDS to help close the gap in diagnostic time and raise awareness. I share my symptoms from childhood until now, how they progressed, what signs of EDS were missed and what it was like at my worst.

My EDS Diagnosis Story:    • My EDS Diagnosis Story👩‍🦽(Ehlers Danl...  
EDS Playlist:    • Ehlers-Danlos Syndrome (EDS)  
CCI and AAI playlist:    • CCI & AAI (Craniocervial Instability ... …
Symptom and Diagnosis Story Playlist:    • Symptom & Diagnosis Story videos  
Q&A Did EDS and MALS affect me during childhood (conversation with my mum):    • Q&A: Did EDS & MALS affect me during ...  
My Symptoms of MALS:    • MY MALS SYMPTOMS (Median Arcuate Liga...  
Symptoms of CCI and AAI:
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👩‍🦽My EDS Diagnosis Story:
👩‍⚕️ Symptom Videos:    • Symptom Vidoes  
🚦Medical Road Trip Series:    • Medical Road Trip Series  
🦓Ehlers Danlos Syndrome (EDS) Playlist:    • Ehlers-Danlos Syndrome (EDS)  
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🦒CCI and AAI Playlist:    • CCI & AAI (Craniocervial Instability ... …
🤢MALS playlist:    • MALS  (Median Arcuate Ligament Syndrome)  
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All Comments (13)
  • @parkerjon29
    Its so interesting how EDS transformed from a genetic condition to an acquired condition...
  • @jodimerusi3250
    I saw so many of my symptoms in you. I had dislocations and partial dislocations since my early 20's. Chronic pain 24/7 and other minor symptoms. Then Covid happened -- vaccine #1 -- couldn't breathe, literally thought I was going to die, curled into fetal position. Started feeling a bit better about 5 months later then a month later Vaccine #2 -- exact same as before couldn't breathe, etc. 6 months after that I had my booster and it was worse than ever. That was in 2020 and I still suffer from many of the effects. I play the flute and nearly 3 full years later I'm finally feeling like my lung capacity has improved to pre vaccine levels. PS I'm nearly 68 years old (Dec) and I was just diagnosed with EDS a month ago. I'm having lots of gastric issues so I'll be looking at your other videos for info.
  • @JanainaBrognoli
    Thanks for sharing, I see I have a lot of these symptoms but very mild compared to yours, guess not liking sports actually helped me.... Do you have tiktok? There are a lot of girls sharing their stories there too, is like a community...
  • I have frequent urination, skin itchy and I get sores on the top of my head ( does anyone else have that problem? ). My feet have a purple look to them, but I have the Classical EDS type and I had problems with feeding as a baby because I couldn’t drink regular formula, I had to drink soy formula. I also have PCOS which stems from my EDS. I have GERD, too. I think I have a gluten sensitivity because I do better when I don’t eat gluten but when I do eat it I get bloated and gassy. Plus, I’m still allergic to dairy because it does the same thing to me. I have gotten to the point where I have to wear pads that are for when you have over active bladders.
  • Hey Mel! I am having a high symptom day and unable to watch the full video. Was one of your symptoms choking or difficulty swallowing or sensation of bone in throat with bobble head? I have HEDS and this is my most disabling symptom set and I am working to understand what could be causing the bone. I have CCI as well, xx much love my friend
  • @B3l0v3d05
    When you say "the thing that went into your arm", do you mean a shot like flu shot? Your episodes sound like post exertional malaise or crash episodes. Was it ME/CFS on top of EDS?
  • I had the whooshing sound at bedtime and others you have but no dislocations. Its so so complex, who diagnoses eds?
  • I would be one of those people who have a lot of issues including pain and I can relate to a lot of what's mentioned in this video but not all of them. I am in the early stage of getting evaluated for EDS because a friend of mine strongly supected that I have EDS
  • Do you know if all these symptoms were from EDS or cci or combined from both?
  • Memory issues was probably from brain stems compression, poor girl. So tragic no drs caught this earlier.