My hEDS Story

I’m so happy to hear that. My son who is now going to be 29 was diagnosed over a year ago at John’s Hopkins after two life threatening emergencies. He seems to be stable thank God. He struggles with pain in his neck back and joints and has muscle weakness. He also had motility issues and troubles gaining weight. He is about to start bpc 157 and feels very hopeful about it

Happy Valentines 💌 Day to you my fellow Zebra! I was notorious for falling, and I still am. I would have “ Charlie Horses” as a child in my legs, I can see up close but not far away, I wear glasses. I was always uncoordinated… I am still like that… as my dad says. And I had other symptoms that now was a sign that I had Classical EDS!

Thank you for sharing your story. About the migraine, mine was triggered by the cold weather, I used to get them every time I cycled to university. The cold air would rush into my lungs too quickly, and my muscles would contract due to the cold, triggering my headache. It was so severe that I had to sleep it off every day before I realised what was happening.

Your story is so similar to mine. I have a working Dx of hEDS, as of now but hope to get the official Dx in 2024.

My this is me moment was reading an infographic on Instagram during EDS awareness month, my GP agreed and I then went on the process and got the official diagnosed last year at 36.

Thank you for putting out content it is super helpful

So helpful thank you

Wow! This is nearly identical to my story😳 officially diagnosed two weeks ago

Thank you for sharing your story! I find it helpful to hear others’ experiences. I’m not-so-patiently waiting for my appointment to be evaluated for eds. Your story of lots of random, seemingly disconnected issues is very similar to mine! My primary doctor suspects eds, which is why I’m getting evaluated, and I think her “aha” moment was at my last yearly checkup, when we were once again discussing my POTS and all my other odd issues, and I mentioned I was hyper-mobile. She asked if I could touch my thumb to my forearm, which I can, and it was like a lightbulb moment. I’m super thankful to have a knowledgeable pcp!

This is extremely relatable, this video describes most of my experiences and I will be a physiotherapist in a week

Thank you for sharing your story. How are you

I had haitus hernia fonr what stopped the acid in mt lungs

Thanks for sharing my autobiography lol

The ladt neurologist sys my upper bidy pain shoulders armpits is migraine without headche?

I think crispr is the way forward for us

Mcas is nightmare but i have no allergy symptoms now with minerals but can mcas cause muscle pain you have had so many mt symptoms sr schubiner says its rhe subconscious mins with asperger's week college n

Just lost my mum who obvously had heds and then got severe ms my grandfather had it he called it slack joints he saud his mu. And grandmother had it though i now no we all have Asperger's they gome together niw my sins diagnosed hope he doesnt get this pain cfs

very poor god mercy her

Are you a doctor?