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Early Signs of EDS That Are Often Overlooked in Childhood!
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- Опубліковано 16 сер 2024
- Early Signs of EDS That Are Often Overlooked in Childhood!
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⚠️ These things often go alongside EDS, but they’re not indicative of EDS unless you also meet the ‘2017 hEDS criteria.’ Except for subluxations & chronic pain, these things are usually normal. ⚠️ (& joints clicking is usually normal & not a subluxation)
I have eds I am 12 I also have pots I struggle in school and I am stuck in a wheelchair my bones dislocate easy and I have been misdiagnosed 7 times since I was 3 these are correct to me but I am only 1 of 5 in the UK to have eds
@@amelieburnside3227 sorry to hear that you have EDS too. What do you mean you’re only 1 in 5 to have EDS in the U.K.? There are thousands of people diagnosed with hypermobile EDS in the U.K., so do you mean one of the other types?
Yes I have type 1 and type 3 I might also have type 2 but where I live the hospital I go to there is only 5 cases
As a child every time I went swimming I would get so cold that my lips would turn blue no matter the temperature I would just go blue.
The doctor saying you were growing and your eyes were adjusting to the height difference is the biggest piece of bologna that I have ever heard! I had to make sure I didn't roll my eyes out of my head when you told that part. 🙄🤣
Agreed!!
Omg I love backwards foot . I love pullin that one out lol
A classic 😂😂
@@GeorginasJourney where are you from
@@S44121 England
@@GeorginasJourney Will you be my friend
@@S44121 I don’t know you
Growing pains in the shins at night during growth spurts is a thing. My son gets eds joint pain, and growing pains.
I said that growing pains do also exist and that they should be taken seriously at 7:46-7:53 :)
Yeah! I had growing pains as a kid and knew exactly what they were. They are SO different from joint pain.
one sign i had was super fast orthodontic work! I had invisalign and apparently my overbite was so bad and my teeth were so crowded they thought it would take 3-4 years. not even a year had gone by and they had to remake my sets (you wear a tray for 1-2 weeks at a time and they're all slightly different) because my overbite was almost completely gone and my teeth were moving much faster than they thought they would. (your gums have connective tissue so this is why it's an eds thing)
and 100% feel you on the soft skin part! i've moisturized maybe 3 times in my entire life and always was so confused by people saying that if you don't moisturize you're gross because your skin will be all dry and ashy but mine Never was. i even had someone feel my arm one time and go "omg what moisturizer do you use" and was shocked when i said that i didn't use any
I’m experiencing that right! Now! I’m about 5 weeks in and my orthodontist said she’d normally expect that amount of movement in about 4 months!
Bleedy gums when brushing your baby teeth, however careful you were and being a late walker are other signs xxxxxxxxx
That’s so interesting, I didn’t know they were signs! xxx
@@ellie_grace_gymnast9069 anything past 15 months is considered late these days, Ellie xxxxx
Walking on my tip toes (and still doing it to be honest ) due to POTS needing to sit on my legs even in school then getting told off for it. Plus wondering why standing to give uni /school presentations wasn't killing everyone else, whilst I was constantly fidgeting. Going to the chiropractor and them wondering why my neck was so flexible.. ha
So many signs in retrospect, aren’t there!!
i walked on my tiptoes when younger too, mental that this could all correlate.
I got diagnosed in 2018 at 28 after years of having issues and no one knowing what was going on. There needs to be more awareness so people get diagnosed earlier!
Completely agree!
This was very eye opening thanks! I think myopia, light sensitive or dry eyes (other eye issues) are another overlooked sign that wasn't mentioned - that and fatigue in things like putting your hands up in class. Also the proprioception thing made me chuckle a bit - I remember doing the Wii sport balance board test at a friend's house and us laughing that the Wii board thought my age was 40 based on my terrible balance.
I had severe myopia until surgeries. Myopia is -3 or 4 diopters if it’s moderate.
My eyes got to -14.75 and -17.25. I read that that is also a sign of Marfans
Yeah I'm pretty sure my "dyspraxia" was actually EDS this whole time, though I am undiagnosed so Who TF knows?!
That’s so strange as I think the same thing with me, I tell you the reason I refused another diagnosis after my Autistic diagnosis was cuz I was exhausted from going in and out of hospital etc my whole life due to digestive issues eg chronic constipation etc which I was on meds for up to the age of 11/12, tiptoe walking which I got to wear heavy steel capped boots (they were purple tho, my fave colour! - tiptoeing is both a sign for EDS and being on the spectrum, ikr so much overlap !), and due to problems with my teeth I had to go to the dentist a lot still do eg my tooth decided to randomly crack in half for no apparent reason whilst I was in year 9 (15) (I was in school when it happened and it was a rlly healthy tooth !) & my gums are super sensitive when you brush them but ppl thought it was cuz of my eczema and sensitive skin issues (woo!), also idk if this is anything but I fainted randomly if I was stressed or feeling dizzy 🥴 from ages 3 to 10 (I don’t anymore/ atm since age 11 till now (age 20), and I had my appendix out at 12/13 in January 2013 due to appendicitis. I could list so many I’d be here for sooo long, basically in more brief words, my medical files are 2 1/2 ring binders or folders long when I was 14/15 years old, I imagine to think how big they are now due to all my sprains and breaks I’ve had in my ankles etc. So I’m actually meant to have a Dyspraxic diagnosis as well, like my GP even said I am. Anyways when I was being assessed at the hospital for autism they were manipulating my joints a lot, weighing me, height measuring me, one of the cis guy doctors decided to push two of my thumbs to my wrist whilst I screamed I wasn’t double jointed in that kinda way cuz it rlly hurt, etc. Now looking back on it, I think that dude knew I could’ve had EDS/ HSD, and they were doing the Beighton Scale test with me as well, they even did it on my dad and mum just to show what they were gonna do with my joints. My dad had subluxed his shoulders almost everyday and his mum had what u would say is probs POTS but undiagnosed- she’s a cardiology outpatient. My mum’s eldest sister and younger sister has similar joint issues. My mum thinks that if I were to take a genetic test for EDS/ HSD, I may have the markers for it, but also I subluxed my hip and ribs in front of my family in August 2020 and then put them into place and let’s just say they kinda got squeamish lmaooo 😂 also to mention I have incredibly good handwriting but have brain fog eg “why did I come in this room” mood but all the time and apparently I hold pens when I’m writing rather strange, it’s comfortable tho ✨🥺 I also had the worst ‘growing pains’ when I was a kid that I would just cry on the floor in agony and my mum said it used to make her cry too cuz of how in pain I looked, knowing she couldn’t rlly do much apart from hug me ,give me hot water bottles , make me have warm bubble baths and give me pain meds 🥺😔
I have had almost every sign that you mentioned before I got my diagnosis. It took 18 years of me fighting for a diagnosis
I’m glad you finally got it! My 6 years now doesn’t seem so long...
@@GeorginasJourney yeah. They suspect it when I was 16 but my parents didn’t want to go to the genetics department and get testing and I had severe growing pains growing up along with being very hyper flexible
I definately been told that I’m double jointed and have poor circulation come winter
that's what all my joints sound like too haha
Love your channel
Thanks!
Thank you for your information, my mystery of being so cold as a child has been answered. When I was 5 my brothers gave me a leg and a wing and I dislocated my hips and shoulders and had to stay in hospital- luckily I can’t remember it at all. Take care my lovely x
Glad you have answers now! x
Injuries from doing sport or some very light activity that shouldn’t cause an injury and not being believed by teachers 🤨🤨🤨
definitely relate to this!
My partner possibly has EDS and his teeth were so crowded when he was younger. He also has a high and narrow hard palate. He has lots of other issues but those are his mouth ones.
I've had almost every one you mentioned! Always the cold one, flexible, clicking joints, not particularly strong, crowded teeth (but I also had a lip tie until about 13 and a tongue tie until 34), started blacking out at age 11, soft skin. I don't recall being particularly easy to bruise and bleed but I've had a lot of injuries and accidents, 9 ankle sprains by age 25. I also don't have memory of growing pains or being told that's what my pain was. My son has global hypotonia, so that might be the medical terminology for being weak. His muscles don't hold their tone right and this contributed to gross motor delays. He wasn't able to crawl until 14 months and couldn't walk until 18 months. His shins are constantly bruised and I think his proprioception is not that great. He is super clumsy and falls a lot still. Two that could go on your list are being told you have flat feet or pronate and stretch marks that aren't from a big growth spurt. I don't have a diagnosis yet but two specialists agree I've probably got something in the EDS family.
You should see if you can get a referral to a rheumatologist if you’re concerned!
@@GeorginasJourney I went to one summer of 2019. They did blood work, x rayed by hands, feet, and neck, lectured me about measles (I have no idea why!) and wrote hypermobility in my chart. Then I was dismissed. So I'm working on finding another one to see and also a cardiologist for dysautonomia testing. I would love to see a geneticist but in my state there are none taking new EDS patients over age 25. And no Covid numbers are going up again so I'm not comfortable taking much risk.
💐This was an incredibly helpful list, and helped me put some pieces better together, Georgina, thank you!
Also, have you or anyone else ever heard or read about extreme sensitivity to pain or irritation in childhood?
Everything seemed to feel much more intense to me than those around me, and I'm only now seeing such differences is usually a sign of my one of my early health issues.
PS I would add cavities or enamel problems despite good oral hygiene, this is common as well.
You're welcome! Many people with EDS had high levels of pain in their childhoods, but sensitivity to pain isn't something I have ever heard of in EDS. People with EDS actually tend to have a high pain tolerance
Yes, definitely now have very high pain tolerance, but my sensitivity to sensation was very high as a kid. Almost like pre-neuropathy if that makes sense.
My family had an ongoing joke about how I would always find a hole, even in a flat road. I was so clumsy and always fell into holes and/or tripped. Finally diagnosed with hEDS last year.
Oh no haha, are you thinking that’s the poor proprioception/ not knowing where body part thing?
@@GeorginasJourney I took it more as the being clumsy idea, but tbh u could totally be right about the perception thing too
I didnt know if I mentioned clumsiness in the video but as I was writing my first reply to you I thought, it’s actually a different way of wording the same thing 😂
@@GeorginasJourney kinda random, but I found your channel yesterday and now see you also have MCAS. I suspect I also have it but am looking for help from someone who has a diagnosis, as I am not sure what questions to ask or what the testing process is like. Do you have an email or Instagram where I could contact you about it (if you’re comfortable ofc)?
I can't handle heat! If I get too hot I feel like I'm being stabbed with a flaming cactus. I'm a cold hardy plant you could say. I have the coordination issues too. I always kick things when I'm walking, or walk into walls. I only sometimes bruise easily, and mainly in just a couple of areas, but I can gently run my nail across my skin and get these tiny purple and red splotches where I scratched. My joints are very unstable. I feel like I was drawn in one of those old cartoons where the characters were loose and bouncy. I have also described it as feeling like a dashboard hula girl except for all the joints move like that.
Have you seen a doctor about your joints? Could be something like HSD or EDS going on since you have so much instability!
@@GeorginasJourney I talk to my doctor about my joints all the time, but I am obese, so I get told to lose weight and the issues will resolve themselves. I just found out that my grandmother and my female cousin were both confirmed to have hEDS, so now I can talk to my doctor about that. I recently got blood tests done and was asked if I currently had an infection or had an autoimmune disease... I said no, so they referred me to a liver clinic that wants me to stop smoking my mmj for 3 months before they can do any of the testing due to insurance. I was told I have scoliosis by a chiropractor I saw once at 13 years old, yet never had any skeletal x-ray or scan or any treatment because my abusive adoptive mom thought she was a quack and wanted to believe that I was just a difficult child who didn't want to do anything. I'm 30 years old and have had these issues since I can remember.
A couple of other things are fragile, peeling nails and missing, spotty, or thin enamel on teeth
Thanks, there are countless!
Haha you could've been describing my childhood (apart from fainting). I had overcrowding and an underbite and got my braces at 23 then jaw surgery at 26. I'm now 39. My diagnosis is HSD which I got at 34 (and CFS but I don't count it) and I'm under a cardiologist with POTS-like symptoms but they don't seem to want to commit to it yet 🤣
That is quite similar! And I also had a diagnosis of HSD & CFS for a long time! Treatment is the main thing, but I hope you can get a diagnosis if you have POTS so that you don’t run into any problems with access to treatment in the future!
Thank you for this video! Super interesting!
You’re welcome!
Did you wish growing up you were good at sports? If so which sport do you wish you thrived at?
I was good at skateboarding, rollerskating & trampolining! And I could get the basketball in the net! I just couldn’t do any sports like football, an actual game of basketball...or really anything that involved other people haha
@@GeorginasJourney Georgina the sk8er girl.... I like it. :p
I'm 51 and have been denied a diagnosis until this year, still waiting for an actual diagnosis, cardiac, stomach, intestines, brain pain, exhaustion, early onset severe osteoarthritis, dislocations, general pain, weakness, migraine-pain and visual disturbance- fatigue.. there's almost nothing unaffected in my body, doctors are bloody useless, I've been much worse since having the Astra zenneca vaccine..has this happened to anyone else ?
Really sorry to hear that doctors haven’t been helpful! A lot of my followers weren’t diagnosed until their 50s & 60s.
I don’t think I’ve had any comments from people saying the AZ vaccine made them any worse though, if that’s any help!
@@GeorginasJourneythank you for replying. I've been feeling completely alone with it all, I spent Monday in hospital as the headache and sickness have got worse, I'm giving email reports to my doctor almost every week now, brain scan was clear but the pain won't stop even after the doctor at a&e tried the best medication that he knew of, he's referring me to genetics in Cardiff, I'm desperate for any advice, this headache is very worrying as it started an hour after the vaccine and has been with me since..for over a year now.. that's definitely not normal 😔 Clare
What if your joints always pop but you don’t notice subluxing? I have TMJD and so it’s possible my jaw actually dislocates, but besides that I just seem to have instability, slightly more mobile at some joints but not extreme, but I’ve never seen something “pop out of place.” Yet I’m having a lot of Eds type symptoms and I’ve had pain issues for several years now and fatigue and I’m like what is going on ;.;
Then you should talk about it with your doctor & hopefully they can refer you to get it looked at properly. In most cases it won’t be actually subluxing as it’s usually noticeable when it does, but still good to rule that out. A physiotherapist can tell you if you’re subluxing and some rheumatologists can say whether it’s EDS or not
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