Video

I feel you my back is very hyoermoble but I didn't dislocat to much when I was a child did gymnastics from 10 on big mistake bits really a condom that got no attention

You're so pretty!

I agree with the long comment from @/manoo. Also, You don't need to prove anything to uneducated, asinine, ableist people. But well said.💙💙 I just found your page, & it has helped me feel so much less alone today. Your video about family being judgemental really hit home, because no one is there for, at no fault of my mine. I've been watching all of your videos. Your content matters; more importantly, you do. Your suffering is valid, & it's perfectly acceptable to talk about it & whatever else you're going through. Wishing you lesser pain days.💙🧡

Thank you. I can’t support my head anymore. Frightening.

I Did Try To Post A Comment Underneath Of Your Very First Video By Saying I Have Been In That 'Situation' Many Times In The Past To Do With Being 'Bullied' And 'Tormented'. 😔. And I Just Subscribed To You. 😃👍.

I believe you and l believe in you Factitious disorder? I had to ask android what that was.. We make sense of the world with the information we have.. Being told that we are deceptive is unhelpful when we are being honest Skin elasticity can vary with diet/ hydration ,BP, temp, age, etc Dentition has already settled.🎉 Great to see you not using support, although the neck wrap looked comfortable and you made it a lovely fashion accessory Please enjoy fresh vegetables and fruit when possible Warrior spirit detected

Thanks for sharing your experience. I wish you good fortune with your challenges 🎉 💐

You're 100% spot on. Thank you for raising awareness that all forms of EDS and/or associated comorbidities can be fatal and this is seldom, if ever, talked about amongst the medical community. The stress from having 10+ doctors, living in poverty and little support may be fatal in and of itself. ❤

Ok so what do we do about it?

Prolotheropy or prozontheopy on the ligaments will stabilise your neck!!!!!

Thanks for Sharing!

Cute-zee! 💕

Tell em Girl! ✋

How are you my friend,, I’m Abel from Africa Tanzania,, need you to be my friend more,, please reply on me if you see this masage,, thank you

+RosieTeaflower *Rat wants out, but that's not an option.*

You’ve always been my rockstar and my hero. Don’t give up my dearest, keep going, keep fighting. Just keep holding on (as much as I have been with my suffering). Faith, hope and love these three remain forever, the greatest being love. Your old fan of Girl Outside, Leanna (“Leo”)

felt That!! brave heart!

The ombudsman said my work injury couldn't had been that bad as I continued to work for 4wks after. I kept working b/c my family dr refused to sign off on my injury so I could stop working. I did b/c what choice did I have.

You're so sweet Rose to talk bout this. The injuried workers and injuried vets are treated so badly in Canada. The drs twists dx so everything is pre-existing. Or they just refuse to investigate. My ex BIL was injuried at work but also had undx cancer. He was dx so late that a fairly easy to treat cancer when caught early turned into a life threatening event. So many injuried workers scans are manipulated. 5yrs later and I'm still waiting for a dx on my arm. Finally, after I found a file, that I wrote I had symptoms within a wk, she's sending me to a new dr.

I find many drs just going along with the system. There seems to be a real fear of them losing their license if they don't. Many won't stand up to organizations such as WC. They tend to not go against their own so getting a second opinion can be very hard in Canada. Most are not brave.

Yes, so true. It was hard to get my surgery in 2007 as I had a preexisting c2 lesion. I felt so discriminated against for being less than a ideal candidate for surgery. Even tho I had done very well when I had previous surgeries. I lived with mild cord compression for over 10yr before my surgery. They only did my surgery when the compression was severe.

Thank you Rose. You're very knowable and I love learning from you. I'm in Canada also. I had a pretty bad whiplash injury at the end of 2017 so I now worry about CCI. In 2007 I have a two level fused neck c-6 to c-4 so the head/whiplash injury was hard on my brainstem/hindbrain. Yes, the healthcare is not good. Better than nothing but still not good. And medical gaslighting is so bad in Canada. They gaslight and deny the disabled, the injuried workers and now the vAx injuried. So sick and corrupt here.

From the bottom of my heart, I want to thank you for sharing your story and spreading awareness on this platform, in spite of the haters. I'm a fellow sufferer, struggling to find answers. I'm waiting for my test results for EDS. In the meantime, I have symptoms of CCI and have been tentatively diagnosed with CCI in a broad scope. I am on a waitlist to see Dr Bolognese, So that I get a second opinion and more accurate identification on what type of CCI I have. One thing that has helped my quality of life is pursuing NUCCA styled Chiropractic. After the first month of getting adjusted twice a week, I have felt sensations in my limbs that I haven't felt in 3 years.... I forgot what it was like to have control of my limbs, because I spent so long working with impaired functionality and strength. I've had strange issues by entire life, but my life sunk for the worst after my accident in 2019 where I hit my head pretty good on the ground going 25mph. Best of which is on your journey, keep speaking out! Maybe I will also speak out

Thank you so much for sharing your experience. I am so lucky and glad i found your videos. For the last 3 months i've been experiencing dizziness/major brain fog/neck stiffness. I've had 3 major traumatic neck injuries and funny enough 2 months before my symptoms had began was when my 3rd neck injury happened. All neck injuries happened on the same side(left). I have crappy insurance and have told my Primary care doctor that i know it's my neck but all the ctscans have shown are moderate degeneration of 2 discs. I've been put on ambien to help sleep otherwise my brain keeps waking me up every 45 minutes after nodding off. May i ask how high your heart rate got when standing before the beta-blockers? Also do you experience brain fog as well? I can feel stiffness not only where the neck meets the skull but also right above the base of the skull which is very concering. My whole life is now revolved around my condition it sucks so much. Anyway thanks for reading this hope you are doing better friend.

Well done. I’m 61 w EDS. You are beautiful and well spoken and doing a great service explaining well the challenges of EDS. I’m so happy I found you this morning!🙏🏻💫

Can Prp help this

Thanks for making this video. Yes to ending medical gaslighting! ✊✊✊ My doc thought I had CCI and ordered an upright X-ray and a CT where my head was turned side to side. The CT was abnormal but the X-ray was read as normal, and she said I don’t have CCI based on the radiology report, but I am fully bedridden with pain. Do any of these specialists you mentioned look at images without you being a patient?

Thank you for this video!! Do you have any advice for how to support a friend through CCI?

Thank you for explaining this! My son’s abilities change from day to day and sometimes from hour to hour. It can really throw people off when they see him in a wheelchair and then he gets up and starts walking! They can’t see his joint pain or his joint subluxations. They can’t see his extreme fatigue or his fluctuating blood pressure. They just see a kid who “looks healthy” using a wheelchair for “no apparent reason”!

My three adult children are all mostly healthy. They have each dealt with anxiety and some depression and I have never ever doubted that they struggle with that. Sadly, my youngest son has multiple invisible disabilities, including hEDS, CCI, Tethered Cord, Dysautonomia, etc., and none of his older siblings support him or even believe him. They have said that he is manipulating people to get what he wants, which is ridiculous, and they have even accused me of faking his diagnoses and using him as a ploy for attention! It is so disheartening and sickening to me, that they won’t look at his medical records or consider the idea that they might be wrong! He is suffering so much, and his older siblings really don’t seem to care. 😢

Dam who asked

Thank you for describing Cervical Medullary Syndrome. My son’s neurosurgeon said he has this but didn’t explain anything or what to do about it. He said to find a pediatric neurosurgeon because my son is 14. He also diagnosed him with hEDS, OTCS, and CCI. He also has Dysautonomia and other diagnoses.

Thank you for sharing this. My son is 14 and has hEDS & CCI, plus multiple other diagnoses. I pray that you can find good treatment!

As somebody with Ehler-Danlos in America that's homeless and disabled and "too young and well looking" to receive disabbilities, I'm jealous of her options It's inhumane, it's necessary I wish I could move there, but they already locked down tourism for in those regards Please god let us have our assisted

You should go on Viva Frei channel and leave a comment. Or send him a message. He was a Canadian lawyer before he went to Florida. He's did a story today on MAID. The company Simons did a commercial on this woman before her assisted death. Sad how MAID is being pushed and almost glorified. She had EDS. I agree also we just want care. Anyways, I thought of you. I had found your channel yrs ago after I had a head/whiplash injury in late 2017. I had a fused neck 10yrs but able to work. WC and it's dr screwed me over. btw, my one dr had to fight back in 2007 to get my surgery as the neurosurgeon believed it was MS. even tho my spine was compressed.

I'm In America Rosie Hi my Friend , and I Did get My Diagnosis for : ( H.E.D.S. / Hypermobile Elhers Danlos Syndrome ) , I'm part of the Community now too. ❤️

Hugs! ❤️🙏

I have Type two Classical EDS. And yes, there’s things that can be dangerous with my type of EDS. I can have POTS, Dysautonomia and other complications. I can have problems with my 💜, and other things. Collagen is found all throughout my body, and with it being bad , it can cause other complications. Please people do your research and get educated before making any Assumptions! I can turn my head around like a 🦉, even though I try to refrain from doing that.

I appreciate this so much. ❤😢

Thanks for making this. I think I 120% have this. I had my Chiari decompression surgery 12 yrs ago after my stroke and ever since I’ve felt like a bobble head. My pain management doc I’ve had for 10 years got me on the correct meds finally. Had my life back but then I moved and this new doc took me off of EVERYTHING😢because he says I’m too young. Ugh. So now starting all over again. The pain is unbearable. But I am meeting a new doctor in 2 weeks cause the other one doesn’t believe anything!

You tell’em! That’s so disrespectful and rude of them! They ought to be made to walk in our shoes for a year and then they’ll learn to watch what they say! I have it on paper that I have EDS and I have Epilepsy. BOTH are a chronic illness! So go sit down and hush up rude and disrespectful brat!

I have EDS and I have experience this first handed and yes I burn out very easily ! And I probably get dehydrated easy because I am constantly drinking my water or soda .

Hate is very powerful energy for change. You are very brave for exposing yourself here in CZcams. Only you can live your life, only you know, and in my own experience is so easy to get addicted to being right, and disconnect. But in my case I walk a long time of decades of self rejection to myself but now not all the times but some times I can feel and say that I respect myself sometimes even I love myself. If I cannot do it how else!!! And fuck the rest of people and their responsibilities and beliefs projected up on us. It is ok to HATE, way better than shame ourselves again. Thanks for the video!!!

I genuinely wish you get better.

Drug abuse?

You have a very cute baby Would 100% give them a treat

I learned some new words while being called out. Nice 😬

Wow I didn't even know that a Stand-Up MRI existed that's really interesting but it kind of seems like there should be more of them all over because to look at someone's skeletal system in the upright position you'd be able to tell a lot of things that you couldn't when they're laying down such as how things all go together with your weight on them I'm only like 2 minutes in but just wanted to comment that I'm going to continue watching