Mind Blowing Facts About EDS! 🤯 (That You Probably Didn’t Know)

Mind blowing facts no one tells you about EDS and you just have to find out along the way 🙃
Thanks for watching! Xxx
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[@stelasulzdorf]

Leave your questions about Neurodivergence for Kiril here ⬇️

[@taniamorken4566]

Wow, this has answered so many of my why questions. I have MCAs, Pots, histamine intolerance, asthma, after a bout with Covid is what triggered it. However, now I'm wondering if I could possibly have EDS? Is there different types of EDs? Like I'm not bendy like you are but I don't have muscle mass. I've often wondered why that is and if my muscles are lax it's made me think, can my inside organs also be? I've wondered if this is why I got Pots?

[@chrissulzdorf456]

Great video hun. EDS is very much underrepresented especially in women. Great work listing the less recognized characteristics of the condition. I wasn't even behind the camera on this one. One woman army right here💪💥💥💥💥💖💖💖💖💖

[@stelasulzdorf]

@@LittleonesmicrosanctuaryThank you for watching my videos and sticking with the channel! MCAS is soooooo difficult to diagnose. Most doctors diagnose on a symptom basis because of this, but honestly if you have EDS I’m almost certain you have MCAS too. Thank you for sharing this with me. I hope my channel can provide a bit of help for you. I can most definitely ask him this! Thank you for your question 💕

[@stelasulzdorf]

@@taniamorken4566it’s highly likely you have EDS. Have you tried doing the Beighton test at home? It’s really easy to find online. If you pass the Beighton test, I would suggest going to your gp and requesting a referral to a rheumatologist 💕

[@stelasulzdorf]

@@chrissulzdorf456Thank you always for your support!! 🥰

[@antonypalmer5804]

So often even specialists do not want to give you a label but without the label, you can not get the help you need.

[@zoe.wilhelmina]

I've been diagnosed with hEDS/ and Autism within the past year (I'm 29 years old, been a rough couple of years lol). I've been watching a lot of your content and I love it so much! It's been really helpful just watching content and listening to other people's experiences with EDS and POTS. I can't wait to see you and your brother discuss neurodivergent things 🦋💗

[@stelasulzdorf]

Thank you so much! That really means a lot to me ❤

[@MeowlodieHL]

I forget how to legs sometimes too. My poor hips are magnetized to door handles as well.

[@analarson2920]

Oh yes and cabinet knobs.

[@LeTrashPanda]

Check out the term "dyspraxia" to see if it fits.

[@Naw-hj8gc]

So glad you mentioned the autism link!! Not many people know about that

[@Truerealism747]

Highly comorbid nits the collegen.affects the subconscious mind am sure that's why we have fantastic memory

[@13fyrefli]

I just commented that when I found out and looked into it, I found out I’m autistic and it’s actually a relief to know why I am the way I am. It’s easier to be kind to myself knowing.

[@beverlyquigley6608]

Growing up I thought everybody got lightheaded and dizzy when you would stand up. Gen X kids you just suck it up and move on. 2012 my systems really got bad and I got diagnosed with POTS/dysautonomia in 2016 CC. My youngest his hyper mobile joints won’t get diagnosed. My middle son started passing out when he was 19. I think we all have a variation of EDS.

[@barbwyr3]

This resonated so much for me! I have hEDS, MCAS, and was diagnosed with adult ADHD. My son (also has hEDS) has OCD and my other son has autism and had an IEP (individual education plan) throughout school. My shoulder and my toes dislocate a lot and my jaws hurt even if I smile too much. It's crazy and validating to see someone else like me. 😂❤

[@Space_Princess]

I RELATE TO ALL OF THESE! im 26 years old and autistic, adhd and dyspraxic myself and i have hEDS Im so glad im not alone in all this and im so so soooo glad it doesn't make me weird like others say. Its not all in our head Thank you are sharing this information with the world ❤❤❤

[@arlettasloan6453]

oh my goodness .. this is what I was trying to explain to people about this odd idea they had that I should want to ride bicycles and drive cars, and how wrong they were to think death wouldn't occur. I know, no matter what I am doing, no matter how coordinated, there is a time limit on it. But, I don't always know what that time limit is. Usually, I do not. Even just holding a purse or chopping vegetables. Sometimes I feel the change coming and can stop and wait it out. So, it's like I can drive a car, in an emergency for as long as I'm wired OR, perhaps, for a short period of time before I suddenly have to pull over & make someon else do it. I'm not sure I'm saying this right. But, I recognize what I am trying to describe in what you described.

[@20NewJourney23]

We walk and turn around the same I'm over here crying... Thank you for sharing this video and showing examples! You are amazing!

[@carolrothauge6615]

HSD have the same variety of comorbidities. The only difference is that they don't meet the specific criteria on the diagnostic checklist. There are EDS & HSD can both be hereditary or spontaneous. They're working on updates to the 2017 criteria called the road to 2026. Thank you for sharing all of these. It's always amazing how many things can be affected and the different ways they can manifest.

[@tammicahill5707]

There is a newer questionnaire called the spider

[@melissamorrison7677]

You have such a calming presence and are so inspirational! I love Juliette has a gun not a perfume. It's exquisite. Looking forward to more content.

[@stelasulzdorf]

Oh my goodness! Thank you so much 🥹

[@melissamorrison7677]

@@stelasulzdorf 🥰😍

[@20NewJourney23]

I'm undiagnosed (for hEDS or any version) and believe I have it and O M G you just explained something I never knew I had a problem with. During a squat/standing up I never purposefully tighten what I believe my pelvic floor muscles and abs tight... etc... OMG... thank you for mentioning this!!! i always recognize that it feels weird and I end up tightening them and my butt after the fact (after I notice I'm weak trying to stand up) and then it helps to stand up. EVERY - TIME.

[@brandyhodges4915]

I truly appreciate you helping validate my experience. 🥰

[@shannongreenwell1278]

I have cEDS, Autism, POTS, CCI+ Epilepsy. Along with Migraines and they’re all spawned from my EDS, I was likely having seizures as a baby because my family would talk to me and I would just stare into space. I Thank you for sharing your journey with me. The Struggle is real but we’re all in this hot mess together!

[@sabinahkruk6719]

Late on this one, EDS people have very poor functioning proprioceptors. These are the receptors in the joints that send signals to the brain giving spatial awareness of where our bodies are positioned in the space around us. There are OT exercises for these receptors that can help sort of retrain them, while it does not fully solve the issue it can make a significant difference for those of us that have more serious problems with this.

[@DLN19]

Thank you for sharing! Great video! I had no idea my clumsiness is an EDS thing! Then again I shouldn't be surprised because anything weird about me seems to be an EDS thing. I was tested tested for vision problems all the time as a kid.because I was always bumping into things (and still do). The vision tests always came back normal and I was told that I'm just not paying attention and not watching where I'm going but I would always say no, I absolutely saw the corner of the table I just walked into it anyway. 😂

[@breemorrison901]

I have to think about every single move I make as well! ❤ Thanks for coming forward with your experience. I always knew there was a reason why I never got into dancing or aerobics. 😊

[@silver1step]

Thanks for the video! i'm in the process of probably being diagnosed with lupus and am trying to figure out if my hypermobility is JUST lupus or also EDS too because the doctor named it as a possibility since I have PoTs (also AUDHD but I didn't mention that lol). I also have dyspraxia & essential tremours so that like really adds pizazz to my life lol. The most annoying thing is my knees falling out of joint when walking or overeaching past my elbow when I go to grab something high up or far away.

[@TheYangnyin]

One of my issues with diagnostic criteria is that they want a family member with it.. but it's under diagnosed and family members die or people are adopted

[@AuntBeeDoesLife]

Man finding this video is eye opening seems you living my life 😮

[@incurablyawesome2024]

Thank you so much for sharing your story! I am going to share mine this week on my channel. Keep pushing forward, you got this!! By the way, the brain fog (for me) can be so embarrassing! And not being able to put on my shoes standing up! Oh, and walking into walls 😅 ! So many things to choose from 😂.

[@andreatate4958]

Ribs are definitely the worst! I turned around while leading a horse and three of my ribs dislocated and I had costrocondritis!! Also have difficulty swallowing! Good luck and thank you for sharing!!!

[@TMSim88]

The only embarrassing things about EDS are that so few doctors know about it, and it can take decades to get diagnosed correctly. In my case, I had obvious symptoms even as a toddler, yet didn't get diagnosed correctly until I was 56! And even then, it was a Physician's Assistant, not a doctor, who picked up on my very clear symptoms. I have Classic Type EDS, and Cardiovalvular EDS, one of the less than 1,000 people worldwide to be diagnosed with CvEDS. Also I have mild Asperger's and ADD.

[@wackyl5692]

What about lack of muscle tone in the intestine or acid reflux? I can bend over and fluid will come back up that I just swallowed and I feel like I empty my bowels fully and I don’t cuz I have to go 5x in 50mins and it’s almost emergent with TONS of gas pains that hurt like mad! I barf from caffeine too and chocolate which I love. There ain’t a day that goes by that I don’t deal with a stomach and /or GASTRO issue and if it’s not that, it’s brain issues.

[@katryanaorange2092]

Yes... mind absolutely blown...!!! You seem like such a cool person hehe

[@wackyl5692]

Yes plz neuodivergence talk plz!🙏

[@emmascottagecorner]

Do people actually walk around with clenched muscles and straight posture but not think about it? I’m legit asking because I could never. Fellow austist here, I can relate to a ton of these things. In the process of getting diagnosed with POTS and hEDS among other likely issues. Thanks for sharing your experiences.

[@rahafdandashi]

I was recently diagnosed with stage 2 lipedema, which makes so much sense now, especially considering it's linked to connective tissue disorders. This condition leads to abnormal fat accumulation in painful nodules, and it's been a real challenge alongside my EDS. The one thing that has consistently brought relief for both my EDS and lipedema symptoms is swimming. I can't help but wonder if there's an evolutionary advantage to this syndrome-maybe we're more adapted to life in water than on land! I wish someone would study that possibility 😭.

[@konichiwa373]

Are you RH negative?

[@rahafdandashi]

Yess

[@konichiwa373]

@@rahafdandashi So am I. A lot of RH negative people really like or feel better in water. I don’t know if you’ve looked into it but Rh negative people tend to have all these interesting similarities. There are a lot of crazy theories. I’ve been wondering if there’s a correlation between RH negative and EDS. I haven’t heard anyone talk about it though.

[@julie_uk_]

Hi Stela, have diagnosis of autism, ADHD, SpLd, Fibromyalgia. Several times over the years, ive approached my GP/physiotherapist about EDS - but always get turned away. I dont think i have hypermobility, but, i certainly have joint/fatigue/temp issues/spacial issues - how on earth do i get the correct assessment?

[@stelasulzdorf]

This is such a difficult question to answer, as I feel like sometimes it depends on how lucky you are to find the right doctor/ be referred to the right place. It took me over 20 years to get my diagnosis. Don’t give up and keep trying! One day you will get your answers xx

[@Truerealism747]

Hypomobility centre ltd ndon I had to go private at 43

[@PoohBearAdventures]

Do you ever get confused as to which leg is in front when you are laying on your side? And end up kicking the cat you were trying to avoid? I mean how can a body forget which leg is which!?

[@PoohBearAdventures]

OMG I sneezed once and my little toe popped out of joint and back in. I mean honestly!

[@claire5399]

I had 2 hospital nurses laugh at me by the way I crawled onto and into the bed . “ Do you always get into bed that way ? Yessssss. I’m 68 same way still 5…. Laughing at me 🤬

[@fgk205]

Right before you said "lack of spacial awareness" i said out loud...well i just hsve 0 spacial awareness. 😅 how ironic

[@thehollyannrose]

I’ve heard about the ab and pelvic floor thing but I had no idea that it was related to EDS lol.

[@emkphotography]

Oh my gosh so true ribs are the worst vs any other joint 😩🦓🌻💖

[@13fyrefli]

If I barely put any pressure on my upper ribs, I will dislocate them. So painful.

[@emkphotography]

@@13fyrefli owch! I'm the same, you have my sympathies! Upper is most painful 😵‍💫 sometimes just breathing or exhaling does it lol it's weird how it flares at different times

[@elynamusy]

I'm currantly being diagnose with EDS and a lot of what you said resonate with what I live with. I'm autistic, with an arterial hypotension (low blood pressure), probably ADHD too. And my god the number of time I was being said that I was clumsy or that I need to pay attention because I would break things or fall (the habit of tripping on my own foot) the stairs steps I miss... The fact that I sweat so much from the slightest heat... Go on hyperventilation from smells, shocking on my saliva... Everything makes sens at 27 years old at least 🥲 PS: Sorry for the possible mistakes I'm French and still not as fluent as I want to be in english 🙏😌

[@shibrina603]

En France c'est encore trop peu diagnostiqué malheureusement. Il n' y a qu a un centre de référence avec délai de rendez vous très très long

[@elynamusy]

@shibrina603 tellement, je suis en train de galérer à trouver un spécialiste pour poser un début de diagnostique officiel dans le sud de la France, je vais commencer à élargir mes recherches parce que là je perd un peu espoir. Pour l'instant la medecin de la fac où je suis m'aide beaucoup et je veux vraiment en profiter pour faire le maximum tant que je suis suivie par elle. Mais c'est vraiment dur. 🥲

[@AuntBeeDoesLife]

I'm hot and cold at the same time and have one leg under blanket one outside seems to work some of the time 😂

[@AuntBeeDoesLife]

I have bursitis in both shoulders and both hips I have osteoarthritis, torn rotator cuff, I can't use my cane cuz it hurts my shoulder, elbow, and wrist, so no one believes I need my wheelchair cuz I forget I need it and take off without it same with cane I'm so forgetful I can't stay on task and I feel I'm bleeding internally in my hip joint from bone spurs and impingement syndrome femoracetabular kind fibromyalgia I feel I torn my it band....doctors look at me sideways when I say I'm in level 10 pain because my blood pressure is low 98/56 um blood work don't show I'm bleeding internally 😢idk what to do they send me home with instructions to return if I experience them and I came in and was leaving with same symptoms I'm just totally confused

[@silentfriend369]

I speak with my doctor this month about the possibility of having ehlers danlos. I am 99% sure I have heds.

[@Lionessliving]

Don't waste time. Go private. Dr Brennan at inherited connective tissue disorder clinic in London. £350. Best money ever spent!!! Good luck on your journey.

[@AuntBeeDoesLife]

I sneeze I cough I sprain my back glute and down my leg causes calf to Charlie horse

[@Kissnlife]

You made it so fun! This kettle of awful..🐱🌿💚

[@KorytEdits]

This is very relatable as an autistic person. Im thinking I need to see my dr lol

[@KorytEdits]

Just got to the where u brought asd up lmao

[@AuntBeeDoesLife]

You sound like me I was allergic to everything soy was the major one