Finally good to see you posting videos again for the first time in a while, Stevie! Cone on, now! What's with you, girl?! Also, good to see these types of conditions like EDS be talked about and stuff like that! People need to hear more about this and other things like it more often because I feel like when we're talking conditions, it just doesn't get brought up enough at all! We need to change that, so this video is one step closer to fixing that problem in the future! Thanks, Stevie!
Seriously pisses me off when dr.s completely dismiss ppl who are suffering. Next time ask to have their "opinion" in writing as you go on to ask another professional
I always need to pause and wait to learn which "ED" a person is talking about since I have also seen it used for Eating Disorder and is very common for Erectile Dysfunction commercial products.
Wish there was more information widely available! I have EDS and the one thing that tipped it is it's the only thing anybody found that also explained why my teeth came in with no enamel! I'm saving up to get implants bc my dentures and the teeth I have left are destroyed. Dental health=health.
When I went for the diagnosis my doc literally told me: "I only diagnose people when I can already see it in the waiting room, because with eds patients the skin hangs loose on the face." And then proceeded to tell me i was exactly 1 point short, while skipping parts of the exam. And that means no treatment nor any consideration of my symptoms during other surgeries I unfortunately needed. And in my country basically everybody refers to this one hospital for eds so forget about trying again. Healthcare sucks
Also the skin hypersextensibility can look different for people with more fat in their body, my skin is still very stretchy all over and thin in certain areas but it’s thick in others because of that layer of fat
Watching you stretch your skin made me wince even though, I assume, it's normal for you and doesn’t cause you pain. Although you mentioned eds causes pain so maybe other things hurt?
I follow another UA-camr eith hEDS, among several other conditions. Her name is Lindsay Murray aka Chronically Lindsay. She does alot of awarwness and education videos regarding her health. She's also bi and engaged and her fiance acts as her care giver.
tfw three docs now have agreed that i likely have hEDS but none will disgnose me without genetic testing; genetic testing that i don't qualify for in my area because im not suspected of having one of the more severe types of EDS :)
I just found out that I have had EDS my whole life and I never realized it. So many things I have always taken for granted I am only now learning are not normal. 😒 I have to see my doctor in a couple of weeks but I've been dealing with Trigeminal Neuralgia for almost 9 years and guess what, it could be caused be the EDS and none of the neurologist ever looked. 😒
See I’ve been diagnosed with several things over the years when I think it could all be EDS. I was told I had hyper mobility and would just have to live with the pain. It was never said to be EDS though. I have since also been diagnosed with Fibromyalgia, I bruise easy and have bladder issues all my life. So again I’m figuring it’s EDS. The only things that have held me off from looking at getting a diagnosis is I’ve never dislocated anything and I don’t think I have stretchy skin. But if those aren’t essential…
The 3 things people with EDS should absolutely be exploring to improve quality of life and pain are- - brain retraining - detox (I think cellcore is the best) - (and possibly) mold avoidance After years of research I will never underestimate the power of stress and mold and what they create together.
no matter what level of Eds you have, i would be honored to be your bf that will never judge of who you are. you are stunningly gorgeous and beautiful.
It's good to see type 3 being spoken about. The amount of times drs will dismiss type 3 as double jointed. *eyeroll*
i have hEDS too, and my skin isn't stretchy, thanks for putting this info out there!! ❤
Finally good to see you posting videos again for the first time in a while, Stevie! Cone on, now! What's with you, girl?! Also, good to see these types of conditions like EDS be talked about and stuff like that! People need to hear more about this and other things like it more often because I feel like when we're talking conditions, it just doesn't get brought up enough at all! We need to change that, so this video is one step closer to fixing that problem in the future! Thanks, Stevie!
@@TheChrismeg34 Yeah, what about him? What does he have to do with this?
can you tell the rheumatologist who diagnosed me with "not rheuma so *shrug*" and when I suggested EDS went "no people with EDS look different" (':
How I hate this kind of „doctor’s“.
Seriously pisses me off when dr.s completely dismiss ppl who are suffering.
Next time ask to have their "opinion" in writing as you go on to ask another professional
I'm sorry you went through that. I hope you find a better doctor
💜 you’re amazing
I always need to pause and wait to learn which "ED" a person is talking about since I have also seen it used for Eating Disorder and is very common for Erectile Dysfunction commercial products.
Wish there was more information widely available! I have EDS and the one thing that tipped it is it's the only thing anybody found that also explained why my teeth came in with no enamel! I'm saving up to get implants bc my dentures and the teeth I have left are destroyed. Dental health=health.
Owow I didn't know that's why you're incredibly good looking ✨
When I went for the diagnosis my doc literally told me: "I only diagnose people when I can already see it in the waiting room, because with eds patients the skin hangs loose on the face." And then proceeded to tell me i was exactly 1 point short, while skipping parts of the exam. And that means no treatment nor any consideration of my symptoms during other surgeries I unfortunately needed. And in my country basically everybody refers to this one hospital for eds so forget about trying again. Healthcare sucks
Thank you for this! I also lack stretchy skin but have hEDS :)
Also the skin hypersextensibility can look different for people with more fat in their body, my skin is still very stretchy all over and thin in certain areas but it’s thick in others because of that layer of fat
Watching you stretch your skin made me wince even though, I assume, it's normal for you and doesn’t cause you pain. Although you mentioned eds causes pain so maybe other things hurt?
Hahahaha wait!!! Stretching your skin hurts??
It would hurt if i tried stretching it like that. @@stevie
@@stevie Yes! That looked painful! Does it not for you? Were you immune to "chinese burns" as a kid?
I follow another UA-camr eith hEDS, among several other conditions.
Her name is Lindsay Murray aka Chronically Lindsay.
She does alot of awarwness and education videos regarding her health.
She's also bi and engaged and her fiance acts as her care giver.
Omg you should do Ashey Gavin's podcast I think she's got the same or something similar
I have hEDS too! Hello fellow zebra 🦓 ❤
tfw three docs now have agreed that i likely have hEDS but none will disgnose me without genetic testing; genetic testing that i don't qualify for in my area because im not suspected of having one of the more severe types of EDS :)
Genetic testing is not a required part of being diagnosed with hEDS. It’s a clinical diagnosis.
note: those two symptoms are the only ones you need for hEDS specifically. other types have completely different symptoms
Oh. Did I not make it clear I was talking about hEDS specifically?
I just found out that I have had EDS my whole life and I never realized it. So many things I have always taken for granted I am only now learning are not normal. 😒 I have to see my doctor in a couple of weeks but I've been dealing with Trigeminal Neuralgia for almost 9 years and guess what, it could be caused be the EDS and none of the neurologist ever looked. 😒
You definitely have the incredibly good looking symptome
See I’ve been diagnosed with several things over the years when I think it could all be EDS. I was told I had hyper mobility and would just have to live with the pain. It was never said to be EDS though. I have since also been diagnosed with Fibromyalgia, I bruise easy and have bladder issues all my life. So again I’m figuring it’s EDS. The only things that have held me off from looking at getting a diagnosis is I’ve never dislocated anything and I don’t think I have stretchy skin. But if those aren’t essential…
Miss you so much
The 3 things people with EDS should absolutely be exploring to improve quality of life and pain are-
- brain retraining
- detox (I think cellcore is the best)
- (and possibly) mold avoidance
After years of research I will never underestimate the power of stress and mold and what they create together.
It's a Syndrome not a disease.
A syndrome refers to a group of symptoms, while a disease refers to an established condition. It's kinda both really
Never Eat Cakes Eat Salmon Sandwiches And Remain Young!
Yes, you are extremely good-looking, but i don't think it's a common symptom.
no matter what level of Eds you have, i would be honored to be your bf that will never judge of who you are. you are stunningly gorgeous and beautiful.
You cut your hair😢😢😢