My hEDS Story

In this video, I share my hEDS story including early symptoms, how I was diagnosed, and how I'm managing my symptoms today. It's a little long, but most EDS diagnostic journeys are!
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[@michelebenedetti2674]

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

[@ehlersdanlosandi]

Glad to hear he's stable. I hope the treatment helps.

[@shannongreenwell1278]

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!

[@ehlersdanlosandi]

And to you as well! At least we have a good excuse for our clumbsiness!

[@shannongreenwell1278]

@@ehlersdanlosandi true that! What’s these” healthy people “‘s excuse?

[@amywu6980]

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.

[@ehlersdanlosandi]

You're welcome! Migraines are the worst, I'd take any severe body pain over a migraine any day!

[@justforsomething]

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.

[@ehlersdanlosandi]

Thank goodness for the internet!

[@user-fr7bh9xf7z]

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.

[@KristinAnna]

So helpful thank you

[@ehlersdanlosandi]

You're very welcome!

[@theogallagher1706]

Thank you for putting out content it is super helpful

[@ehlersdanlosandi]

You're very welcome!

[@bethanyspence4156]

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!

[@ehlersdanlosandi]

Your pcp sounds amazing! I hope your evaluation appointment goes well. I still think it's strange that hEDS is supposed to be rare but the evaluation wait lists are so long.

[@bethanyspence4156]

Yes! I’ve wondered the same thing 🤷‍♀️

[@michelebenedetti2674]

Thank you for sharing your story. How are you

[@ehlersdanlosandi]

You're welcome! I'm doing well, how about yourself?

[@DanieGirl-tt9xc]

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

[@jwilleseries7764]

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

[@ehlersdanlosandi]

Congratulations! Your hypermobile patients will be so lucky to have someone who personally understands their struggles!

[@tomsale5142]

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

[@Mommyandbell]

Thanks for sharing my autobiography lol

[@ehlersdanlosandi]

Haha, you're welcome! It's funny how so many of us have similar stories!

[@oliverbird6914]

I think crispr is the way forward for us

[@ehlersdanlosandi]

That would sure be interesting!

[@oliverbird6914]

@@ehlersdanlosandi have you seen those student scientists who said they found a heds gene. It was from a few years ago now. Not sure what happened to it

[@tomsale5142]

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

[@ehlersdanlosandi]

I've heard of that! Never experienced it myself, though.

[@tomsale5142]

@@ehlersdanlosandi maybe he is right then sure feels like migraine though I haven't had conventional migraine fir 8 years he says they transform over the years or can do if it is I need to break the cycle but with having Àspergers ime very sensitive to medication and a sensitive soul to lolit does say on the migraine trust to but I haven't met anyone else

[@tomsale5142]

@@ehlersdanlosandi sorry about replys phone messes with spellings for some reason when press send

[@tomsale5142]

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

[@ehlersdanlosandi]

I'm so sorry to hear about your mum! Hopefully an early diagnosis will help your son.

[@tomsale5142]

​@@ehlersdanlosandithankyou have you found any resolution to the pain

[@ehlersdanlosandi]

@tomsale5142 not anything that completely stops pain or keeps it from coming back, but I have my go to pain relief tactics. I like heat therapy for most pain, either a hot bath or heat packs, massage is nice, occasionally I'll use pain relief creams. Bracing joints helps me too. I don't do much for medication, just ibuprofen for migraines and headaches mostly.

[@tomsale5142]

@@ehlersdanlosandi upper body for myself constant if you twist your skin thumb first finger does it sound like velcro.like to no if it's a eds symptom ndo you also have asperger's.ime told it's 60 percent comorbid

[@ehlersdanlosandi]

@@tomsale5142 I'm not sure if I'm doing the thumb/finger thing right, but it doesn't sound like velcro. I do not have Asbergers or anything similar, but I have heard of the connection.

[@tomsale5142]

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

[@ehlersdanlosandi]

I'm not sure if mcas can cause muscle pain, but if it does, I bet it would be hard to distinguish between EDS pain!

[@tomsale5142]

@@ehlersdanlosandi very hard pain is isn't it have your symptoms changed over the years

[@ehlersdanlosandi]

@tomsale5142 my pain definitely changes, it's worse now than it was in my 20's, but I have a lot of good days too. It's kind of all over the place and hard to predict.

[@tomsale5142]

@@ehlersdanlosandi thank you for your replys it's a lonely.illness with few around to speak to about this

[@mahmodromieh6802]

very poor god mercy her

[@noone-4029]

Are you a doctor?

[@ehlersdanlosandi]

No, I'm actually a radiologic technologist (I'm trained to do xrays, CT scans, mammograms, ultrasounds, bone density scans, and nuclear medicine). The information I give out on this channel is a mix of personal experience as a patient with hEDS, being a healthcare professional myself, and also info pulled from sources like the Ehlers Danlos Society.

[@noone-4029]

@@ehlersdanlosandi Thank your for your efforts in this channel, you're helping me a lot Wish you the best ♥️

[@ehlersdanlosandi]

@@noone-4029 you're so welcome, thank you!

[@oliverbird6914]

I tell you, in areas like this, most patients are way ahead of the vast majority doctors in terms of awareness and treating themselves in this field. If you're looking for help from a doctor you're basically screwed in general

[@ehlersdanlosandi]

@oliverbird6914 I agree, many EDS patients are their own experts!