I really appreciate what your doing for everyone and helping to educate people About EDS ! Keep up the great work! With Awareness brings education and Understanding.
The first one was hilarious....I really needed a laugh. EDS sit down comedy, what a hoot! The drug metabolism thing has made me suffer with dental procedures, Novocaine is not my friend. You're lucky! I need 3-4 shots, then I'm numb for more than a day. My mom & I both got comments about looking younger so there's that, these vids are top notch & really bring awareness....thanks for sharing, Izzy
The thing about the lack of education around disability. I was in class today and one student referred to a physical malformation as a disability. To this my teacher said "I thought you were such a woke person. I didn't think you'd use the word disability". I was genuinely offended so I just said "disability is not a bad word" and the teacher responded with "I thought we stopped using that word and replaced it with uniquely gifted". This is just my personal opinion but I think it's so stupid that society feels the need to make disability a bad word and then make childish sounding replacement words to try and lift us up when, to me, they're actually putting us down.
This is the issue I have with 'normalising' disability. It makes disability that much more invisible because it's just 'normal'. Instead of teaching to normalise disability and 'abnormality' we need to teach acceptance of difference, that it's OK to be different and teaching how to help others who have needs over and above able bodied/minded people.
@@Thorned_Rose I agree. It shouldn't necessarily be about normalizing cause it's not but, it's the patronization and the subtle belittling that just normalizes engrained ableism that just makes me wanna scream that needs to change.
Ick. Because being in pain and asking for help is "weakness" that makes you "lower" I mean, sometimes I'm literally lower. On a chair or in the ground is a nice place to be. But until society changes itself a bit, I'm gonna be rendered less able. Sure, got some gifts too, but being patronizing and always positioning my pain and difficulties as only a gift suuure gets in the way of me receiving help and contributes to my pain :(
@@IzzyKDNA and I KNOW people are always judging me and giving me nasty looks when I park in the handicap spot. SORRY KAREN I CANT WALK WITHOUT MY KNEES FALLING OUT OF PLACE
The silly thing is that if you are literally unable to walk then using a scooter is virtually impossible I've been told! Something to do with how you get into a wheelchair with your arms and how that's not possible with a scooter. I use a scooter all the time when I am out and I really love it so much. It's my freedom basically!
And of course if you happen to be over weight with an invisible disability you get the “Oh look at the fat person using the scooter. If they walked more then they wouldn’t be so fat”.
People always act like those carts in the store are for wheelchair users only. Nope we bring our own chair with us. Those carts are for people that get fatigued from walking or for what ever someone needs it for. I've seen very pregnant women struggling through the store before. I told them the carts are for people like them. One lady took me up on the idea and had an employee near by bring her one.
I’ve been trying to get diagnosed since elementary school, I’m already a senior. No one listens to us for some reason and my family won’t listen either. It’s always “you’re just growing” or “stop hurting yourself then” it’s exhausting
@@cloudykitten465 I'm so sorry you're going through that. I'm going through it as a Mom and a patient. I'm told I'm not "that sick" despite being ruled totally disabled, (I was told to curl up and die in a nursing home) and "I want" my child to have this too. No... I don't, far from it, but she was positive for MEDS with a Beigton of 7. Take the checklist to all of your appointments and have them do the beighton score. 🦓💪🍀
My teen daughter struggles with knee pain. Out of habit when I was growing up I assumed it's growing pains. I'm definitely going to see if she meets any other criteria from your videos and talk to her doctor. We have a family history of aging well, soft skin, an 'allergy to adhesives', and some others. Thank you!!!
I hope you were able to find out! I wish my mom would take initiative and do research like this. A cardiologist told me I have dysautonomia, but that I needed to be referred for blood/genetic testing to make sure I don't have anything else or a specific type of thing. It seems very obvious that I have a lot more than just dysautonomia going on, and I am hypermobile and might have EDS, but my mom refuses to get me tested because she's always seen me as the "healthy" one in the family and she gets mad when I'm hurt or sick. Unfortunately for me, that's every single day for years, so I can never be honest about how I feel. I don't remember a single day where I wasn't in pain anymore. I have another friend who has always had the same health issues as me and we've been two sides of the same coin for our whole lives. I can even tell when she's not okay even though we're long distance friends now. She looks almost exactly like me, same height, same hair, same eyes, same last name, everything. She got diagnosed with a gene mutation that causes all these issues we both have and can cause the conditions I'm diagnosed with/suspected to have. The kicker is that if they hadn't caught it in time, my friend might have died soon. There seems to be a lot of genetic factors I have indicating I might also have this gene mutation. I don't want to jump to conclusions, but I have a bad feeling about it looking at my family's health record and then looking at mine. I've been told multiple times that I need testing and I've still never had testing. My mom insists I'm making everything up, and I don't even have regular welfare checks at the doctor's office. I've been once for a checkup since I was 12, when I was supposed to be going in for at least yearly checkups. I'm 17. If I do actually have this gene mutation like my friend but I don't find out about it because I was never tested for it, there's a chance it could actually kill me because it's a deadly mutation when left untreated.
the tape was too relatable. i had to find a specific kind of tape from one brand that i can actually use for my knees because it's the only one that doesn't mess up my skin much.
I am 67. Loved your examples of Criteria for diagnoses. My son was the first diagnosed AFTER another doctor told him he had retroverted hips which allowed him to walk with his feet turned completely backwards, and did surgery to rotate his legs. Bad outcome and he has suffered from it for years. When my daughter was diagnosed I realized it came from my side of the family (They had different fathers). After my many surgeries to remove damaged or non functioning organs and repair ankle (5 just for that one), I dug deeper. Turns out my father was extremely Hypermobile. So, I have been diagnosed, 3 of my children and 7 of my grandchildren have also been diagnosed. One has a genetics degree so she could help find genes associated, but collapsed at work and is now in a wheelchair because lost use of her legs. This is not a fun syndrome. It took a long time to discover what was wrong and a long time to get the kids to quit showing off their party tricks as it caused more damage. I do have to say there was one perk. With all five of my children I was in labor 4 hours or less. Last one was 19 min. Gotta find the good amongst the bad. Keep sharing information. Just knowing what it is helps with the coping.
Hello! Was there any explanation for the legs giving out? I’m just curious because this has happened to me as well when standing for a period of time i have been diagnosed with Ed’s pots ect i am in my early 20s but for times sake I’m going to a neuro for the back pain and weakness. The hip thing u mentioned sounds rly familiar too
I go my diagnosis at 21, however looking back presented with symptoms since I was born.... all it takes is for one doctor to say "have you heard of x" "or been diagnosed with x". I am so thankful for my knee surgeon who figured it all out, he couldn't diagnose me but pointed me in the right direction. 🙂
It wasn't on my radar until a few years ago. My aunt (late 60s) got the diagnosis, and the rest of the family was just like... Oh. Okay. That's what that is. My mother has RA, and about a zillion other things going on with her health, so no one noticed the EDS. It's makes so much sense with hindsight though. (We are all hypermobile.)
I was diagnosed at 40. I had severe “growing pains” all through childhood. I clearly remember my dad almost daily massaging my legs because I was crying in pain. My parents tried to find out what was wrong but just kept being told I would outgrow it. And since I had other potentially life threatening issues going on, the just couldn’t focus on the leg pain. I am just lucky that they always believed my pain was real even if I did not get an answer until my 40s.
I am 38 and just got diagnosed last week. So many years of weekly bizarre symptoms constantly at the Dr. Pregnancies that weren’t good and ended with a hysterectomy at 28 (but 2 beautiful kids so can’t complain) The pain is just relentless but I must admit I have never felt lighter after being finally given the answer to why it’s been a long constant road of pain, medical issues and feeling like people just think I am either a hypochondriac or just mentally unwell. Awesome to see people in the comments so supportive of each other. 😀💜🌈
I've been having back pain for about two days straight now, most likely due to my scoliosis. It's pretty bad and I've spent the past two days on the floor. I got told today by a family member that my scoliosis isn't that bad and I just need to stretch. I do yoga every second day. Just because it's not severe doesn't mean it doesn't hurt, not how that works.
I'm so glad that this video could be educational! It's really sweet that you're interested in learning about the condition that affects a few of your friends!
I feel you so hard on the scooter cart thing. Never even used one because I’m scared I’ll get the looks like I’m a dumb kid playing around. Tbh I usually stop in the furniture section at target to sit for a minute and take a break. Or I just have my boyfriend push the cart and I lean on it and use it as a mobility aid! Why are invisible disabilities not more recognized?!
Some of these remind me of my experience with curbside voting in my city. I was told I could only do curbside if I had a disability so I said yes I do and an attendant was told to come out and meet me and she was like "it's her?!?!?!" And asked them many times if I was the disabled person. I was a bit bummed.
I never noticed how you get so little views and only 20k subs, I thought you had like millions lmfao I’m surprised that your channel isn’t bigger! You deserve it!!
40 years. It took me FORTY YEARS to get my diagnosis. I got diagnosed AFTER my daughter did. (It took her five years to get hers.) I spent my adolescence being sent to shrink after shrink for a physical disorder. And I'm 50... no one believes me. So, there's that.
I have recently been diagnosed with rheumatoid arthritis and I realise that everyday is different for me and I feel like people always think I’m faking it. Especially as I like to do what I can do when I can so when I can’t it may look like I just don’t want to.
By the time I finish shopping I'm in a lot of pain and extremely fatigued to the point where I need to text someone to come get me because I can't function enough to get home, yet I'm still too insecure to use the motorized shopping carts because I feel like people will think badly of me because I'm able to walk without it.
Same here. I go grocery shopping and I’ve begged her to let me use the carts bc of how bad my pain/weakness/fatigue is and I think she just thinks I'm joking abt wanting to use one
Izzy, I just wanted to say thank you for creating so much content about EDS. I can attribute my rather quick diagnosis to you because you did such a wonderful job laying out symptoms and comorbitiies. It took about a year and a half from first suspected to diagnosed with hEDS after of yesterday. I did a lot of digging on my own (AKA binge watching your videos) before mentioning the possibility to a doctor, who promptly set up my genetics referral. If not for you, I would likely still be wondering what is to blame for my chronic pain and illness.
How are you doing with your diagnosis? Are you still in cheer? If you are, or not, protect your joints! I was a dancer and cheerleader and my joints suffer now that I’m 43. Hope you are getting the support you need after your EDS diagnosis. 🙏
@@how.disability.justice None, matter of excluding other things like mitochondrial myopathies that can be tested for but clinically same as HEDS. Then diagnosis of HEDS is clinical grounds only. Also to exclude osteogenesis imperfecta and other diagnoses which involve hypermobility. Other EDS are also a bit hypermobile. HEDS are just outstandingly so!
i never knew about the EDS side of tiktok! this is so cool! i'm currently waiting to get in with a geneticist (been waiting since last year and was supposed to go see her in april but then covid happened) so this is definitely really interesting! both my mom and my sister have hEDS, and some other family members have various forms of EDS, so it's definitely a genetic trait :) i show all the markers, have the medical history and everything, i'm just waiting on an official diagnosis lol your channel has helped me so much while i've been waiting for a diagnosis!
I'm the only one in my immediate family symptomatic enough to actually meet the hEDS diagnostic criteria, but my poor brother is the one who deals with the anaesthesia asensitivity. Poor kid will get 3 or 4 shots of numbing agent and when he tells the dentist he can still feel it, they don't believe him, or they say "it'll kick in soon". My heart goes out to everyone dealing with anaesthesia issues and those who get shoved to the wayside because they don't have enough variety of symptoms
Yes! I don't have eds but I do have spina bifida. I was told I wouldn't walk. I get weird stares but if I don't use a wheelchair or scooter I end up with bad sores on my feet and I'm very prone to infection. I'm just trying to continue being able to walk because if I continue to push myself too far, I would ever be able to walk again
I had a lady ask me on the bus once she had seen my cane "what's wrong with you?" And. It really affected me. I felt embarrassed. I'm a high school student using a cane and people look at me weird and it sometimes makes me think if I "deserve" using a cane.
Considering I am a bit obsessed with watching TikTok, I would love if you did more of these! Even if they were about POTS, gastroparesis, or general chronic illness instead.
This is so interesting. I came across you ages ago, probably because I watch ME videos! Since watching you though I have realised I probably have EDS or HSD and have got in touch with my local society for help. Will hopefully get that sorted once coronavirus us over. But those 2 things about random allergic reactions and local anaesthetic, I have those too and thought they were just random quirks! It takes so long for the dentist to get me numb enough and even then I can still feel a bit of pain. Thank you! X
That local anesthesia issue is too relatable. I didn't know that it was a symptom of EDS until recently. I've always had issues with that and have endured dental procedures without it - ouch! But the worse was when I had a large cyst removed from my head. It bleed a lot and I needed a ton of stitches, and the procedure hurt so bad. But I lied and said I couldn't feel it, knowing that if I didn't they would just stab me with needles over and over again with no result to try to numb it.
I had a doctor tell me that the idea behind why people with EDS don’t look like they age is because their skin doesn’t wrinkle like typical skin does... instead it sags. Some other weird things with our EDS collagen. Also I totally get the adhesive thing. I don’t normally have a problem with adhesives, only occasionally, and it is never a specific type of adhesive. Like last week, I got a band aid after a blood draw, and when I ripped it off my skin got all red, stung, and swelled where the adhesive was. It proceeded to break out in a rash, and then the skin broke and it was bleeding. It has since healed, but even two weeks later there is still a mild mark of where the adhesive was. The band aid I had on the other arm from a flu shot was perfectly fine (same type of band aid too).
I think there is something to this skin aging thing. I am in my 40s and people often say I look younger by about a decade or more. I don’t have much in the way of wrinkles, but I see the sagging in my jowls.
@@IchigoSpazYes, no wrinkles at all, but a bit of sagging or I don't know how to call it, I have a feeling like my skin is not firmly attached to the muscles and everything under...
Diagnosed at 53..complaining about pain since I was a very young child. Growing pains, "everyone gets a bit of pain now and again", "It's just hormones/period pains/pregnancy pain is normal", "It's menopause/depression/hypochondria"...
this helped me feel so much better about EDS because I have it but no one I know understands just how bad it is. I have had days where I shouldn't have been standing or walking around for the amount of pain I'm in (I almost pass out from it) but I had to because I don't have any mobility aids and my family thinks I have a low pain tolerance. My mom has it but hers is VERY mild and she seems to think it's the same for everyone. I'm only 12 so I can't really do anything to manage pain other than the fact that I have ankle braces. This makes me feel a lot better about considering asking to get mobility aids. I recently have been doing a lot of research about EDS to find some sort of treatment or something to help pain management. I've been told that lots of intense exercise helps. I'm not sure if it helps other people but I know it just makes it worse for me both long term and short term. I really appreciate seeing this. Thank you.
I've always been told that I can't possibly be the age I am. Same with my daughter. I'm 45 she is 21 and we've been confused for sisters. They think I'm in my twenties and think that she is barely a teen. I'm sure our height and weight don't help as we're both short and skinny too. We've wondered if our HEDs had an impact on our youthful looks but we also come from a family of very young-looking people. And most of them don't have any sign of EDs.
Thank you so much for talking about EDS. And sharing everything.!! I am a hEDS person as well, the more education the better.🙏😊🌺🐾 invisible illness is hard for people to understand. If they can’t see it they don’t believe you
I'm tending to become rather tart if I encounter Karen or Kevins again. I've even been double Karened by two ADULT senior women who were shopping together! I regret not responding to them. They followed me around the store baiting me and again when I was sitting down outside.
With my EDS, my severity of symptoms change hour to hour sometimes. I can completely crash in the matter of minutes with no signs, and before my diagnosis this was extremely scary and hard to understand. I wasn't diagnosed until I was 31.
This is SO CRAZY to finally see I'm NOT crazy... I went into the hospital yesterday and had a heart monitor and ekg.. now I have red patches all over my chest because of the adhesive pads. I have had psoriasis and eczema all my life, so I break out with anything. I haven't been able to wear jewelry in 20 years. Last time I had a tooth pulled, they used FIVE shots to numb my mouth and I still felt it as they wouldn't use any more. Also, I'm 50 and smoke and don't have any wrinkles on my face. Just stretch marks all over my body. Most days I feel like I've been kicked by a horse...and that's a good day because I can still get up and wobble around without using a cane or anything, but I know it's coming as I trip and fall constantly. You are so young to have to deal with this but it is great to see the young population getting help for this. I've had none for 5 decades! I hope everyone suffering from this gets through the day ok! Much love to you all!!
It took me until my 30's to get an official diagnosis, but I remember as a kid I would cry myself to sleep from the deep, aching pains in my bones/muscles, and getting told "it's just growing pains". I also had lordosis pretty bad, and I remember a neighbor kid's mom made fun of me for it, like it was an affectation and not my body's inability to support my spine... uh, but on the plus side, I went back to school in my 30s and I've had classmates ask what my plans were for my when my 21st was... and when I forget my ID, I get refused alcohol sales so~ near constant pain, fatigue, and exercise to maintain my mobility- but I look younger? Also, I've felt really awkward about it because I "look" healthy, and am strong due to being athletic & active for my entire life, asking for accommodations or telling people about my situation has, at times, been received poorly. I had an employer accuse me of lying about it because I shared a video where I was swimming!
Oh my gooood the local anesthetic one. Every filling I get (i've had 12+ bc of braces and a palatal expander lmao) I need 3 shots of nonvaccine at the dentists. They start with one (and the numbing gel on your gum does NOT stop that first shot pain) and end up at 3 before telling me they 'cant legally give me more'. I usually still feel nerve pain. For minor fillings. Also had to get a steroid shot in a bunion once- topical numbing does not work either. Hurt so bad I had muscle spasms. Like, thanks, I warned you that it wouldn't work.
I was diagnosed this week with EDS. It has been super helpful to watch your videos. And in this one in particular to hear that the dramatic swing between feeling fine some days or in the morning and being in so much pain later that day or the next day it's not just me is so comforting. Thank you for helping me not feel so alone
I have Ehlers Danlos syndrome and I've been using a walker for the past 6 years (I'm nearly 49) and I had an older 'lady' come up to me and say 'Aren't you a bit young to be using one of those?' and I replied 'Aren't you a bit old not to be using one?'. She turned bright red, shut up and walked away.
Hi Izzy, I really like this video! It was lighthearted and not so depressing as is the case in most EDS online forums and groups. I would rather watch uplifting, funny and educational stuff than just drag the bad parts of EDS through the mud over and over. We all live the bad parts but let’s keep having fun! Thanks!
Interesting. People often assume that I am 10+ years younger than I am. Also, the tape thing. Oh my goodness. My children were both born by c-sec. When I had baby #1, the tape around my incision caused so much more pain than the incision itself. My skin was blistering and peeling to an absurd degree. So, when I had the second c-sec, I warned everyone that I was allergic to the tape. They said, No worries! We'll use a different kind! Different tape, same problem. My poor skin. I've had enough babies now.
Oh my gosh!!! I had no idea about the local anesthetic! A few years ago I had to get a drain put into my gallbladder and they used local anesthetic but I kept saying “I can feel it, I can feel it”. I could physically feel when they poked into my gallbladder. It was the worst pain of my life - worse than labor! And the doctors made me feel pathetic. I’m crying right now just so relieved knowing I wasn’t crazy.
I’m 40 and several years older than my husband. Last month someone thought I was his daughter. It’s my new favorite story because he always teases me about being older so now I just jab back at him and call him Dad lol! I’ve also always been thought to be my daughter’s sister.
I have EDS & I worked at Chick-fil-A this summer. When people asked me how old I was and I told them I was 19, they were shocked and could have sworn I was only 15 or 16 at most so maybe there’s some truth to that. Also, when I was a kid and I had my teeth pulled, I told them I could feel it after them giving me 3-4 shots & they didn’t believe me. (I wasn’t diagnosed until I was 14) it’s crazy how many things are EDS related. Also, I had this severe back pain as a kid & the chiropractor put sports tap along my spin. It was so insanely itchy, so my mom ripped it off (like a bandaid) & it took off a bunch of my skin with it. My mind is blown right now that this is so common for people with EDS.
I was finally diagnosed six years ago after fighting with the doctors for twenty years. I'm still fighting the VA to make this service connected because although the disease is genetic, my time in the US Navy greatly exacerbated my condition. I spent ten years in a very physically active position. I have medical records that go back those ten yens covering complaints of joint pains. Now, at 67, I finally have the support of my VA doctors.
I’m about to turn 18 and my journey with doctors will begin. No more family or bad family doctor to hold me back. I have all the right symptoms for EDS and I’ve even been passing out since I was 8 and yet No one has been concerned and keep making up excuses like they have done all they can when I’ve only been for one heart test. That is no where near enough.
I'm heading over to tik tok after this ❤ in the 8 past weeks I was diagnosed with hypermobility ehlers danlos syndrome, gastroparesis and suspected mast cell activation. Finding your channel and support groups has really helped with educating myself and not feeling so alone
im so happy my channel and support groups have helped you. EDS can be very isolating, and it can be really helpful to connect with others who are going through similar struggles
I'm 20, last week I was FINALLY diagnosed, even though I was showing symptoms since I was like 2 years old. One doctor told my mom I had EDS when I was 10, but never cared to document it and other doctors never listened. 10 years of terrible pain and all just to be told by my doctor at the end that I am too old to be treated in physical therapy and all we can do is take pills for the pain (which doesn't work for me) . So difficult
I love your videos! I was diagnosed with EDS at age 53, in Dec 2019. Your videos have been incredibly informative and helpful. Thanks for doing what you do!
I just recently found you, as well as i found a girl on tiktok, who had the same symptoms as me. She was diagnosed with EDS. I was living in pain my whole life, i was trying to get diagnosed for anything over 15 years ago and my doctors then said i must be facking it or "it just the way you are". Now i know how much of a bulls... it is. I really hope there will be more awarness of these types of dissabilities and syndromes, so no more kids will have to go through what we had. I am going to the doctors right now to get my diagnose as soon as possible, but it is expensive as hell. Wish you all the best!
Hypermobile and going by dental procedures, local anaesthetic doesn't work on me! Until I learned about the link (when I first learned about hypermobility spectrum disorders through you!) I just assumed the anaesthetics were really weak. But like...it's a nerve block so it probably shouldn't be.
Random fact from researching planning in large buildings, accessible stalls aren't just for people living with a disability. They are a stall that are planned for everyone to use, that are also accessible. That's the planned use when calculating number of toilets needed. This is different to a separate accessible bathroom, but this room is accessible to anyone who wants to use it for whatever reason, living with a diagnosed disability or having banged their hip leaving the car and feeling a little stiff. Its not the same as a parking space requiring a placard, it's set aside for anyone who feels like they want to use those accessible features using the bathroom at that moment.
Btw there are some great alternatives to kinesio taping, that work much better w/ my EDS :) The BodyBraid and ArmBraid, for example, are systems of stretchy straps that provide joint support and enhance proprioception, the way KT does. (Make sure to cover any sensitive skin/scars, as the straps can chaffe.) Additionally, there’s CW-X’s Stabilyx 2.0 Compression Leggings, which have built-in bracing that produce stability and support to your knees and hips. While neither option is particularly cheap, if you want to hike again or be able to stand up for at a concert lol, these are like the holy grail!
And if you wanna try kinesio taping again (I still use it when I sprain an ankle etc), use Skin Protectant wipes beforehand and TacAway wipes to remove the adhesive. Skin Protectant wipes create a barrier between the adhesive and your skin, holding tape/bandages on longer, making it easy to remove w/ just alcohol, and reducing the overall risk of an allergic reaction.
Just wanted to comment and say thanks to you i found out about eds and was officially diagnosed a few weeks ago. :) It also turns out a number of people in my family have it, as well, so I really can’t thank you enough for spreading awareness and creating this content. ❤️
I have EDS. I am 27 and people still reguarly think that I'm in High School. My mom who also probably has EDS but refuses to get tested is 49 and people think that she is my sister. My grandmother is no longer alive but she also might have had EDS, but she was always assumed to be younger than her actual age. People reguarly thought that she was my mom when I was younger.
I'm definitely resistant to anesthetic, as is my mother. We've both been awake during surgery before. My dentist has to use more than twice as much novocaine as he would for a normal person for me to even get some relief. I got really used to controlling my response to pain so that I could "pretend" that I was numb. My current dentist was the first realize that I was faking. He was like "you can feel this?!" I tried to downplay how painful it was and he said "no, you're not supposed to feel this at all. We are GOING to get you numb" and he kept going until I actually had significant pain relief. Fabulous dentist.
My hips pop out of place. My family thought it was for attention for a long time, but I literally can't walk when this happens due to the fact that it is not connected. This is really validating, I think I meet enough criteria for hEDS to see a Dr about it.
Fun video! I have cEDS, POTs, CCI, Chiari, Occult Tethered cord, a spinal fusion from scoliosis, snapping scapula, MCAS, and CVID. I am probably forgetting some things but yeah thats brain fog lol. Yes you are so right that things keep piling up with EDS. I enjoy your channel! Much love.
I'm 35, went to the pharmacy yesterday, asked for help finding a medicine. The pharmacist advised me against it, since it could be dangerous for "kids who are still developing" 😂😂 I mean, my shoulder is separated, and I can't put pressure on my knee, but this kind of stuff is at least a silver twinkle in my days
Considering getting tested for EDS now - I fit most of the criteria I can test myself. I’ve had recurring and sustained muscle/tendon problems and injuries, and just a bunch of other things that my doctors never been able to explain. I know there’s a high chance I’m just hyper mobile, but I’ve only just heard about EDS so I feel it doesn’t hurt to chat to my GP about the possibility. Thanks for sharing your story and chatting about EDS.
I am currently 23 years old and growing up i had a lot of pain and no one really paid any attention to it so i stopped bringing it up until i needed hip surgery for a labral tear in 2018 and afterwards my physical therapist told me about EDS and told me to look into it....I’be had multiple doctors bring it up the past few years and I’m still trying to get fully diagnosed...its so frustrating
Before I had a diagnosis of EDS, I had my wisdom teeth removed and I woke up in the middle and felt most of it. They wrote about it in their journal cause they never saw anything like it. Anesthesia doesn’t work for me.
@S M yeah I also had my tonsils out when I was 6, woke up saw the staff and had a freak out and went off on the staff. Being 6 waking up and and seeing yourself being hooked up to machines is scary. Yeah... I have scars in my arm from the IV to this day and I’m 28. Scared me from needles for life.
@S M I’m so sorry that happened to you. I don’t even have words. Yeah I literally thought they were trying to kill me or something and I throw up every time I go under which luckily hasn’t been too much.
At 24 I still have a 'baby face', but my hands! It seems to be common (from what I can tell?) that our hands often look aged, and I swear mine look 10 years older than they actually are.
I recently got a mobility permit for use at uni and I don't use mobility aids - every time I arrive and park in the accessible parking, I just get so anxious. I can see people looking at me, and fortunately no one has approached me (or damaged my car, which I've heard of happening to others), but I'm fearful of the day that it happens. It's really tough as I'm also doing an ecology degree, and some days I can do longer walks; so I often feel guilty over not being in 'enough pain' to feel worthy of receiving a permit, but also being in 'too much pain' to be getting a degree where ableism is very common and people struggle to understand why I'm taking it if I can't access all the sites other ecologists can.
As a ballerina & contortionist from 1980-2009 (forcefully retired due to a horrific stage injury) with weird issues & injuries, I chased that EDS Dx once I heard of it in 2013. My gaslighting PCP & cronies from 1995-2020 were fired by me once I got to the geneticist. 7/2/2020 changed my life at 45yo. Since then both of my parents (in their 70s) were Dxd. In 2020, we discovered my dad passed down COL1A1, VUS. In 2022, we discovered my mom passed down a pathogenic COL4A4 gene. That explains a ton of my issues, hers, & her relatives for generations. I got a double whammy for everything. Even neurodiversity.
I got diagnosed with EDS type 3 in July this year and I got diagnosed with POTS a few weeks ago. It took me 12 YEARS to get my diagnosed of EDS. Some doctors still think I'm "faking it" I no longer see them.
Ugh, I can relate to the local anesthetic part sooo much, some time ago I had almost 20 stitches put on my knee with just two not working injections, but the doctor was convinced that if it's not working at the moment then it will start in a few minutes. Well, it didn't 😂 also, great video, very relatable
Izzy, I am just now finding out I have EDS and probably would t have known if my son hadn’t been diagnosed several years ago. He is 10 now and he and I deal with all of this together. He has had many many many medical issues since birth but he has made it his mission to enjoy life. Anyways, I loved watching this video because it is nice to see that we aren’t alone and there is still so much to figure out. Prayers to you and if you pray, send some our way! Sending LOVE ❤️
The physical therapist says I have EDS but I’m not sure? I know my pain is all over the place and I ignore it because I can’t stop my life everytime my hip pops out of place and and sometimes it burns and turns red afterwards, sometimes it doesn’t, sometimes popping my hip in and out causes no pain. Sometimes I can’t balance at all on one leg. I’m had so many people say, “you don’t look like you’re in pain, you’re not crying” sorry I don’t look how you want me to when I have shooting nerve pain down my legs
My father some days has to use a wheel chair or a cane but some days he can walk normally or is bed bound he doesn’t have this (disorder?) but he was in a b-52 crash in the air force and she shattered all his disks in his spine we are happy to still have him with us :) but it just come to show just because someone doesn’t have a certain disorder or doesn’t use a type of mobility one day that they did the other doesn’t mean their faking what their doing :) also love your video!❤❤
We are allowed to use medical devices no matter what chronic conditions we might have. But thanks for helping make these videos they are so helpful. I'm disabled with chronic illness and still working on more diagnosis have gastropreasis and might have pots but still working on that I had a bad allergy reaction to the heart monitor and so can't get one to use it so they are finding other options open to test for it. ❤
My daughter has really bad fibro and asthma... she needs her disability car tag and mobile shopping carts. Breathing is necessary and the pain is real. Not all disabilities are visible. 💗 love your video
I get out of my car after parking in an accessible spot, I get stares… unless I’m using my cane. And then some people just laugh because I’m fat. I avoid using the motorized carts at grocery stores even when I’m hurting bad for the same reasons
I never knew the thing about local anesthetic!!! It has never worked on me, I would be screaming during the procedure and the doctors said I was being dramatic. I was like NO I FEEL EVERYTHING. OMG.
Local anesthetic not working has a lot to do with the ‘lose skin’/collagen of the skin, as for health people the local anesthetic injected will stay just at the place where it is injected keeping that part numb, but with EDS it spreads to a way larger area and therefore it doesn’t work the way it should. Usually it does work when getting a larger amount of local anesthetic, but it still wears of faster than in healthy people. The anesthetic used at the dentist is usually a different one than in hospital, so that’s why it usually does work at the dentist (and you can totally ask them to use that one for other procedures).
If you feel like starting a TikTok about EDS (and HSD, don't leave us out, please) that would be awesome. Oh! And could you maybe link the tiktok accounts from the video on the description? ☺️
You told me something I hadn't heard before and I'll have to look into as I am severely "allergic" to basically all antibiotics, steroids, and have external and eventually internal hives (they blow up my intestines and it feels like little critters are moving around inside them and the pressure is so severe that it makes me vomit, etc) and they haven't been able to figure out why I'm so hyper sensitive. You mention some with EDS have this hypersensitivity issue to the tape (which I completely had hives from it and it took like 2.5 weeks for the reaction to leave after I removed it). So thanks for mentioning that extra issue some have. I'm newer to diagnosis so haven't heard of a lot of the intricacies of a very complicated syndrome yet.
Hi I love your VIDEOS and your CHANNEL!!🥰I started watching you recently when I had my most recent 3 Knee surgeries for my arthritis and genu valgum .Keep making great videos 👏👏🙂❤
My physio really told me my joints are hyper mobile, but that's not a diagnosis and not to worry about it, when I'm literally in pain everyday and my rib subluxes from just a hug 😑
Seeing things about EDS makes me just want to cry so hard. I KNOW I have it. I’m under investigation for pots and am in pain every single day and get dislocations and subluxations often. It’s taking so long for medical professionals to listen to me. It’s been over 4 years since having issues with my heart and they’re only just looking into pots. They kept blaming my anxiety. Also, been in and out of hospital and physio for my joints since I was 12 years old. I was told back then I was hyper mobile but that it would get better as I got older… it’s gotten so much worse. I’m 22 as of now (although I look 15) and also suffer with gastrointestinal issues along with other things. I feel so dumb in public because a 22 year old shouldn’t have mobility issues like I do. It’s embarrassing and frustrating as I cannot do the things I need to. Not having a diagnosis makes it tricky too as I can’t just say I have Eds, or a disability. It’s debilitating.
I had to pause the video just to come comment while you were talking about mobility aids. I am 50 years old and have affected by EDS, POTS, MCAS, migraines, hashimoto's, gastroparesis and narcolepsy since I was in middle school. (there were signs of some of my issues earlier, but things got worse when puberty started) At this point in time for mobility aids depending on how I feel that day I could be wearing leg braces and walking with my service dog wearing his custom Bold Lead Designs mobility harness ... or I could be using my walker... or I could be using my manual wheelchair... or I may just need my custom full power wheelchair... (sadly, I need the full power wheelchair often enough that we finally had to buy a mobility van to carry it) The idea that someone might think I was faking or "wasn't disabled enough" for any of my mobility aids would infuriate me!! Just because I can have good days does not, in any way, negate my bad days. People are so uneducated.
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I have pots and chronic pain. I’m assuming I have EDS too.
I really appreciate what your doing for everyone and helping to educate people About EDS ! Keep up the great work! With Awareness brings education and Understanding.
The first one was hilarious....I really needed a laugh. EDS sit down comedy, what a hoot! The drug metabolism thing has made me suffer with dental procedures, Novocaine is not my friend. You're lucky! I need 3-4 shots, then I'm numb for more than a day. My mom & I both got comments about looking younger so there's that, these vids are top notch & really bring awareness....thanks for sharing, Izzy
I have POTS, hypermobility, and excema and I’m getting tested for EDS soon. I’m pretty sure I have it, so it won’t be a surprise to me if I do.
The thing about the lack of education around disability. I was in class today and one student referred to a physical malformation as a disability. To this my teacher said "I thought you were such a woke person. I didn't think you'd use the word disability". I was genuinely offended so I just said "disability is not a bad word" and the teacher responded with "I thought we stopped using that word and replaced it with uniquely gifted". This is just my personal opinion but I think it's so stupid that society feels the need to make disability a bad word and then make childish sounding replacement words to try and lift us up when, to me, they're actually putting us down.
I agree! It’s patronising
Wow that's so messed up, im sorry
This is the issue I have with 'normalising' disability. It makes disability that much more invisible because it's just 'normal'. Instead of teaching to normalise disability and 'abnormality' we need to teach acceptance of difference, that it's OK to be different and teaching how to help others who have needs over and above able bodied/minded people.
@@Thorned_Rose I agree. It shouldn't necessarily be about normalizing cause it's not but, it's the patronization and the subtle belittling that just normalizes engrained ableism that just makes me wanna scream that needs to change.
Ick. Because being in pain and asking for help is "weakness" that makes you "lower"
I mean, sometimes I'm literally lower. On a chair or in the ground is a nice place to be. But until society changes itself a bit, I'm gonna be rendered less able. Sure, got some gifts too, but being patronizing and always positioning my pain and difficulties as only a gift suuure gets in the way of me receiving help and contributes to my pain :(
Watching these is so therapeutic… I feel so validated that everyone else with EDS is depressed about it too.
I totally agree with using the motorized scooters! I always feel like I’m “not disabled enough” but that’s total BS!
SAME 😭❤
@@IzzyKDNA and I KNOW people are always judging me and giving me nasty looks when I park in the handicap spot. SORRY KAREN I CANT WALK WITHOUT MY KNEES FALLING OUT OF PLACE
The silly thing is that if you are literally unable to walk then using a scooter is virtually impossible I've been told! Something to do with how you get into a wheelchair with your arms and how that's not possible with a scooter. I use a scooter all the time when I am out and I really love it so much. It's my freedom basically!
And of course if you happen to be over weight with an invisible disability you get the “Oh look at the fat person using the scooter. If they walked more then they wouldn’t be so fat”.
This Karen gives you permission to use the motorized scooter.
People always act like those carts in the store are for wheelchair users only. Nope we bring our own chair with us. Those carts are for people that get fatigued from walking or for what ever someone needs it for. I've seen very pregnant women struggling through the store before. I told them the carts are for people like them. One lady took me up on the idea and had an employee near by bring her one.
I’ve been trying to get diagnosed since elementary school, I’m already a senior. No one listens to us for some reason and my family won’t listen either. It’s always “you’re just growing” or “stop hurting yourself then” it’s exhausting
I have the same issue.
I’m so lucky my mom cares my dad keeps saying I’m just growing and my sis says I’m faking it
@@cloudykitten465 I'm so sorry you're going through that. I'm going through it as a Mom and a patient. I'm told I'm not "that sick" despite being ruled totally disabled, (I was told to curl up and die in a nursing home) and "I want" my child to have this too. No... I don't, far from it, but she was positive for MEDS with a Beigton of 7. Take the checklist to all of your appointments and have them do the beighton score. 🦓💪🍀
@@GENNi0606 Stay strong 🥺
You have to get genetic testing done, even after that it doesn't end though. I'm 29 and people still think I'm just making shit up
My teen daughter struggles with knee pain. Out of habit when I was growing up I assumed it's growing pains. I'm definitely going to see if she meets any other criteria from your videos and talk to her doctor. We have a family history of aging well, soft skin, an 'allergy to adhesives', and some others. Thank you!!!
I hope you were able to find out! I wish my mom would take initiative and do research like this. A cardiologist told me I have dysautonomia, but that I needed to be referred for blood/genetic testing to make sure I don't have anything else or a specific type of thing. It seems very obvious that I have a lot more than just dysautonomia going on, and I am hypermobile and might have EDS, but my mom refuses to get me tested because she's always seen me as the "healthy" one in the family and she gets mad when I'm hurt or sick. Unfortunately for me, that's every single day for years, so I can never be honest about how I feel. I don't remember a single day where I wasn't in pain anymore. I have another friend who has always had the same health issues as me and we've been two sides of the same coin for our whole lives. I can even tell when she's not okay even though we're long distance friends now. She looks almost exactly like me, same height, same hair, same eyes, same last name, everything. She got diagnosed with a gene mutation that causes all these issues we both have and can cause the conditions I'm diagnosed with/suspected to have. The kicker is that if they hadn't caught it in time, my friend might have died soon. There seems to be a lot of genetic factors I have indicating I might also have this gene mutation. I don't want to jump to conclusions, but I have a bad feeling about it looking at my family's health record and then looking at mine. I've been told multiple times that I need testing and I've still never had testing. My mom insists I'm making everything up, and I don't even have regular welfare checks at the doctor's office. I've been once for a checkup since I was 12, when I was supposed to be going in for at least yearly checkups. I'm 17. If I do actually have this gene mutation like my friend but I don't find out about it because I was never tested for it, there's a chance it could actually kill me because it's a deadly mutation when left untreated.
I saw in some places that its not normal to have growing pains, i'm going to be trying the diagnosis in the next days
the tape was too relatable. i had to find a specific kind of tape from one brand that i can actually use for my knees because it's the only one that doesn't mess up my skin much.
I have a scar in my leg from where KT ripped my skin off…
@@giraffeyanne24 ouch! I have had that happen to my arm at the bend where I had it on my elbow. Not fun at all!
I am 67. Loved your examples of Criteria for diagnoses. My son was the first diagnosed AFTER another doctor told him he had retroverted hips which allowed him to walk with his feet turned completely backwards, and did surgery to rotate his legs. Bad outcome and he has suffered from it for years. When my daughter was diagnosed I realized it came from my side of the family (They had different fathers). After my many surgeries to remove damaged or non functioning organs and repair ankle (5 just for that one), I dug deeper. Turns out my father was extremely Hypermobile. So, I have been diagnosed, 3 of my children and 7 of my grandchildren have also been diagnosed. One has a genetics degree so she could help find genes associated, but collapsed at work and is now in a wheelchair because lost use of her legs. This is not a fun syndrome. It took a long time to discover what was wrong and a long time to get the kids to quit showing off their party tricks as it caused more damage. I do have to say there was one perk. With all five of my children I was in labor 4 hours or less. Last one was 19 min. Gotta find the good amongst the bad. Keep sharing information. Just knowing what it is helps with the coping.
Hello! Was there any explanation for the legs giving out? I’m just curious because this has happened to me as well when standing for a period of time i have been diagnosed with Ed’s pots ect i am in my early 20s but for times sake I’m going to a neuro for the back pain and weakness. The hip thing u mentioned sounds rly familiar too
20 years. T W E N T Y. I JUST got diagnosed officially a week ago and I'm 32.
I go my diagnosis at 21, however looking back presented with symptoms since I was born.... all it takes is for one doctor to say "have you heard of x" "or been diagnosed with x". I am so thankful for my knee surgeon who figured it all out, he couldn't diagnose me but pointed me in the right direction. 🙂
It wasn't on my radar until a few years ago. My aunt (late 60s) got the diagnosis, and the rest of the family was just like... Oh. Okay. That's what that is.
My mother has RA, and about a zillion other things going on with her health, so no one noticed the EDS. It's makes so much sense with hindsight though. (We are all hypermobile.)
I was diagnosed at 40. I had severe “growing pains” all through childhood. I clearly remember my dad almost daily massaging my legs because I was crying in pain.
My parents tried to find out what was wrong but just kept being told I would outgrow it. And since I had other potentially life threatening issues going on, the just couldn’t focus on the leg pain.
I am just lucky that they always believed my pain was real even if I did not get an answer until my 40s.
I have Lyme & co & it took that long too 😭😭
I am 38 and just got diagnosed last week. So many years of weekly bizarre symptoms constantly at the Dr. Pregnancies that weren’t good and ended with a hysterectomy at 28 (but 2 beautiful kids so can’t complain) The pain is just relentless but I must admit I have never felt lighter after being finally given the answer to why it’s been a long constant road of pain, medical issues and feeling like people just think I am either a hypochondriac or just mentally unwell. Awesome to see people in the comments so supportive of each other. 😀💜🌈
I've been having back pain for about two days straight now, most likely due to my scoliosis. It's pretty bad and I've spent the past two days on the floor. I got told today by a family member that my scoliosis isn't that bad and I just need to stretch. I do yoga every second day. Just because it's not severe doesn't mean it doesn't hurt, not how that works.
😔
I really appreciate this video! I personally do not EDS but a couple of my friends do. This has helped educate me a bit!
I'm so glad that this video could be educational! It's really sweet that you're interested in learning about the condition that affects a few of your friends!
@@IzzyKDNA :) me too! Love your channel!
@@IzzyKDNA fantastic 👏
I don’t have EDS either.
I don’t have friends with EDS I just like learning about medical stuff
I feel you so hard on the scooter cart thing. Never even used one because I’m scared I’ll get the looks like I’m a dumb kid playing around. Tbh I usually stop in the furniture section at target to sit for a minute and take a break. Or I just have my boyfriend push the cart and I lean on it and use it as a mobility aid! Why are invisible disabilities not more recognized?!
I use my housekeepers cart at work like it’s my walker, I lean on it to help bring me comfort when my body hurts especially my back hurts.
Some of these remind me of my experience with curbside voting in my city. I was told I could only do curbside if I had a disability so I said yes I do and an attendant was told to come out and meet me and she was like "it's her?!?!?!" And asked them many times if I was the disabled person. I was a bit bummed.
dude I gotta use the diabled toilet sometimes because with my pots i get super dizzy and vertigo kicks in in small spaces but i 'look fine!' ffs
Yesssss my dizziness and vertigo is constant..especially any time I stand up and/or walk
Same, because I need the bar to help me stand back up
Even if I have a cane and a feeding tube, people still make remarks, we can't win 🙄
I never noticed how you get so little views and only 20k subs, I thought you had like millions lmfao I’m surprised that your channel isn’t bigger! You deserve it!!
lol thanks. well, maybe one day? haha
40 years. It took me FORTY YEARS to get my diagnosis. I got diagnosed AFTER my daughter did. (It took her five years to get hers.) I spent my adolescence being sent to shrink after shrink for a physical disorder. And I'm 50... no one believes me. So, there's that.
I have recently been diagnosed with rheumatoid arthritis and I realise that everyday is different for me and I feel like people always think I’m faking it. Especially as I like to do what I can do when I can so when I can’t it may look like I just don’t want to.
By the time I finish shopping I'm in a lot of pain and extremely fatigued to the point where I need to text someone to come get me because I can't function enough to get home, yet I'm still too insecure to use the motorized shopping carts because I feel like people will think badly of me because I'm able to walk without it.
I have an issue with this. I even have a handicapped tag and still park far away because of embarrassment.
Same here. I go grocery shopping and I’ve begged her to let me use the carts bc of how bad my pain/weakness/fatigue is and I think she just thinks I'm joking abt wanting to use one
Izzy, I just wanted to say thank you for creating so much content about EDS. I can attribute my rather quick diagnosis to you because you did such a wonderful job laying out symptoms and comorbitiies. It took about a year and a half from first suspected to diagnosed with hEDS after of yesterday. I did a lot of digging on my own (AKA binge watching your videos) before mentioning the possibility to a doctor, who promptly set up my genetics referral. If not for you, I would likely still be wondering what is to blame for my chronic pain and illness.
How are you doing with your diagnosis? Are you still in cheer? If you are, or not, protect your joints! I was a dancer and cheerleader and my joints suffer now that I’m 43. Hope you are getting the support you need after your EDS diagnosis. 🙏
which genetic tests test for hEDS?
@@how.disability.justice None, matter of excluding other things like mitochondrial myopathies that can be tested for but clinically same as HEDS. Then diagnosis of HEDS is clinical grounds only. Also to exclude osteogenesis imperfecta and other diagnoses which involve hypermobility. Other EDS are also a bit hypermobile. HEDS are just outstandingly so!
i never knew about the EDS side of tiktok! this is so cool! i'm currently waiting to get in with a geneticist (been waiting since last year and was supposed to go see her in april but then covid happened) so this is definitely really interesting! both my mom and my sister have hEDS, and some other family members have various forms of EDS, so it's definitely a genetic trait :) i show all the markers, have the medical history and everything, i'm just waiting on an official diagnosis lol your channel has helped me so much while i've been waiting for a diagnosis!
I'm the only one in my immediate family symptomatic enough to actually meet the hEDS diagnostic criteria, but my poor brother is the one who deals with the anaesthesia asensitivity. Poor kid will get 3 or 4 shots of numbing agent and when he tells the dentist he can still feel it, they don't believe him, or they say "it'll kick in soon".
My heart goes out to everyone dealing with anaesthesia issues and those who get shoved to the wayside because they don't have enough variety of symptoms
Yes! I don't have eds but I do have spina bifida. I was told I wouldn't walk. I get weird stares but if I don't use a wheelchair or scooter I end up with bad sores on my feet and I'm very prone to infection. I'm just trying to continue being able to walk because if I continue to push myself too far, I would ever be able to walk again
I had a lady ask me on the bus once she had seen my cane "what's wrong with you?" And. It really affected me. I felt embarrassed. I'm a high school student using a cane and people look at me weird and it sometimes makes me think if I "deserve" using a cane.
ugh im so sorry you. i can understand why this affected you a lot.
Considering I am a bit obsessed with watching TikTok, I would love if you did more of these! Even if they were about POTS, gastroparesis, or general chronic illness instead.
This is so interesting. I came across you ages ago, probably because I watch ME videos! Since watching you though I have realised I probably have EDS or HSD and have got in touch with my local society for help. Will hopefully get that sorted once coronavirus us over. But those 2 things about random allergic reactions and local anaesthetic, I have those too and thought they were just random quirks! It takes so long for the dentist to get me numb enough and even then I can still feel a bit of pain. Thank you! X
The dental numbing thing is one of the most reliable flags I’ve seen for people having a collagen disorder
@@kimsward4065 that’s me when I go to the dentist, and I have allergic reaction to many different types of medicine!
That local anesthesia issue is too relatable. I didn't know that it was a symptom of EDS until recently. I've always had issues with that and have endured dental procedures without it - ouch! But the worse was when I had a large cyst removed from my head. It bleed a lot and I needed a ton of stitches, and the procedure hurt so bad. But I lied and said I couldn't feel it, knowing that if I didn't they would just stab me with needles over and over again with no result to try to numb it.
I got diagnosed at 23 after having health problems all my life. It’s so wild how long it takes sometimes.
I had a doctor tell me that the idea behind why people with EDS don’t look like they age is because their skin doesn’t wrinkle like typical skin does... instead it sags. Some other weird things with our EDS collagen. Also I totally get the adhesive thing. I don’t normally have a problem with adhesives, only occasionally, and it is never a specific type of adhesive. Like last week, I got a band aid after a blood draw, and when I ripped it off my skin got all red, stung, and swelled where the adhesive was. It proceeded to break out in a rash, and then the skin broke and it was bleeding. It has since healed, but even two weeks later there is still a mild mark of where the adhesive was. The band aid I had on the other arm from a flu shot was perfectly fine (same type of band aid too).
Yes it's weird. At one stage I reacted to even hypoallergenic tape. Now Bandaids are fine decades later!
I think there is something to this skin aging thing. I am in my 40s and people often say I look younger by about a decade or more. I don’t have much in the way of wrinkles, but I see the sagging in my jowls.
It affects everyone who has it differently my sister has Ehler’s Danlos and she is almost 40 yet looks like she’s in her 20’s
@@matthewbates9629Same, I went on a date when I was almost 40, and the guy was surprised when he found out my age, he said he thought I was 26-27 🤣
@@IchigoSpazYes, no wrinkles at all, but a bit of sagging or I don't know how to call it, I have a feeling like my skin is not firmly attached to the muscles and everything under...
Diagnosed at 53..complaining about pain since I was a very young child. Growing pains, "everyone gets a bit of pain now and again", "It's just hormones/period pains/pregnancy pain is normal", "It's menopause/depression/hypochondria"...
Yea. Everyday can be so different. Its so hard to make plans some times. Cause you don't get to decide on what your body wants to do.
this helped me feel so much better about EDS because I have it but no one I know understands just how bad it is. I have had days where I shouldn't have been standing or walking around for the amount of pain I'm in (I almost pass out from it) but I had to because I don't have any mobility aids and my family thinks I have a low pain tolerance. My mom has it but hers is VERY mild and she seems to think it's the same for everyone. I'm only 12 so I can't really do anything to manage pain other than the fact that I have ankle braces. This makes me feel a lot better about considering asking to get mobility aids. I recently have been doing a lot of research about EDS to find some sort of treatment or something to help pain management. I've been told that lots of intense exercise helps. I'm not sure if it helps other people but I know it just makes it worse for me both long term and short term. I really appreciate seeing this. Thank you.
I've always been told that I can't possibly be the age I am. Same with my daughter. I'm 45 she is 21 and we've been confused for sisters. They think I'm in my twenties and think that she is barely a teen. I'm sure our height and weight don't help as we're both short and skinny too. We've wondered if our HEDs had an impact on our youthful looks but we also come from a family of very young-looking people. And most of them don't have any sign of EDs.
Thank you so much for talking about EDS. And sharing everything.!! I am a hEDS person as well, the more education the better.🙏😊🌺🐾 invisible illness is hard for people to understand. If they can’t see it they don’t believe you
I'm tending to become rather tart if I encounter Karen or Kevins again. I've even been double Karened by two ADULT senior women who were shopping together! I regret not responding to them. They followed me around the store baiting me and again when I was sitting down outside.
With my EDS, my severity of symptoms change hour to hour sometimes. I can completely crash in the matter of minutes with no signs, and before my diagnosis this was extremely scary and hard to understand. I wasn't diagnosed until I was 31.
Makes it hard to plan!
Makes it hard to live.
This is SO CRAZY to finally see I'm NOT crazy... I went into the hospital yesterday and had a heart monitor and ekg.. now I have red patches all over my chest because of the adhesive pads. I have had psoriasis and eczema all my life, so I break out with anything. I haven't been able to wear jewelry in 20 years. Last time I had a tooth pulled, they used FIVE shots to numb my mouth and I still felt it as they wouldn't use any more. Also, I'm 50 and smoke and don't have any wrinkles on my face. Just stretch marks all over my body. Most days I feel like I've been kicked by a horse...and that's a good day because I can still get up and wobble around without using a cane or anything, but I know it's coming as I trip and fall constantly. You are so young to have to deal with this but it is great to see the young population getting help for this. I've had none for 5 decades! I hope everyone suffering from this gets through the day ok! Much love to you all!!
It took me until my 30's to get an official diagnosis, but I remember as a kid I would cry myself to sleep from the deep, aching pains in my bones/muscles, and getting told "it's just growing pains". I also had lordosis pretty bad, and I remember a neighbor kid's mom made fun of me for it, like it was an affectation and not my body's inability to support my spine...
uh, but on the plus side, I went back to school in my 30s and I've had classmates ask what my plans were for my when my 21st was... and when I forget my ID, I get refused alcohol sales so~ near constant pain, fatigue, and exercise to maintain my mobility- but I look younger?
Also, I've felt really awkward about it because I "look" healthy, and am strong due to being athletic & active for my entire life, asking for accommodations or telling people about my situation has, at times, been received poorly. I had an employer accuse me of lying about it because I shared a video where I was swimming!
Oh my gooood the local anesthetic one. Every filling I get (i've had 12+ bc of braces and a palatal expander lmao) I need 3 shots of nonvaccine at the dentists. They start with one (and the numbing gel on your gum does NOT stop that first shot pain) and end up at 3 before telling me they 'cant legally give me more'. I usually still feel nerve pain. For minor fillings. Also had to get a steroid shot in a bunion once- topical numbing does not work either. Hurt so bad I had muscle spasms. Like, thanks, I warned you that it wouldn't work.
I have POTS and hEDS too and it's sucks, people always trying to tell ME about MY disability especially since I'm relatively young (
This was such a creative and fun video! I would love apart 2 in the future
Thank you!!!
I was diagnosed this week with EDS. It has been super helpful to watch your videos. And in this one in particular to hear that the dramatic swing between feeling fine some days or in the morning and being in so much pain later that day or the next day it's not just me is so comforting. Thank you for helping me not feel so alone
Yes,I wish I knew what I'd done right when I have a good day!
I have Ehlers Danlos syndrome and I've been using a walker for the past 6 years (I'm nearly 49) and I had an older 'lady' come up to me and say 'Aren't you a bit young to be using one of those?' and I replied 'Aren't you a bit old not to be using one?'. She turned bright red, shut up and walked away.
Hi Izzy, I really like this video! It was lighthearted and not so depressing as is the case in most EDS online forums and groups. I would rather watch uplifting, funny and educational stuff than just drag the bad parts of EDS through the mud over and over. We all live the bad parts but let’s keep having fun! Thanks!
Interesting.
People often assume that I am 10+ years younger than I am.
Also, the tape thing. Oh my goodness. My children were both born by c-sec. When I had baby #1, the tape around my incision caused so much more pain than the incision itself. My skin was blistering and peeling to an absurd degree. So, when I had the second c-sec, I warned everyone that I was allergic to the tape. They said, No worries! We'll use a different kind! Different tape, same problem. My poor skin. I've had enough babies now.
Oh my gosh!!! I had no idea about the local anesthetic! A few years ago I had to get a drain put into my gallbladder and they used local anesthetic but I kept saying “I can feel it, I can feel it”. I could physically feel when they poked into my gallbladder. It was the worst pain of my life - worse than labor! And the doctors made me feel pathetic. I’m crying right now just so relieved knowing I wasn’t crazy.
I’m 40 and several years older than my husband. Last month someone thought I was his daughter. It’s my new favorite story because he always teases me about being older so now I just jab back at him and call him Dad lol! I’ve also always been thought to be my daughter’s sister.
LOL
This happens a lot to me too. It’s like the only positive to this disease. Looks 28 outside, is actually 41, and is 79 inside😑
@@MrTurtluv every person is different
I have EDS & I worked at Chick-fil-A this summer. When people asked me how old I was and I told them I was 19, they were shocked and could have sworn I was only 15 or 16 at most so maybe there’s some truth to that.
Also, when I was a kid and I had my teeth pulled, I told them I could feel it after them giving me 3-4 shots & they didn’t believe me. (I wasn’t diagnosed until I was 14) it’s crazy how many things are EDS related. Also, I had this severe back pain as a kid & the chiropractor put sports tap along my spin. It was so insanely itchy, so my mom ripped it off (like a bandaid) & it took off a bunch of my skin with it. My mind is blown right now that this is so common for people with EDS.
I was finally diagnosed six years ago after fighting with the doctors for twenty years. I'm still fighting the VA to make this service connected because although the disease is genetic, my time in the US Navy greatly exacerbated my condition. I spent ten years in a very physically active position. I have medical records that go back those ten yens covering complaints of joint pains. Now, at 67, I finally have the support of my VA doctors.
I’m about to turn 18 and my journey with doctors will begin. No more family or bad family doctor to hold me back. I have all the right symptoms for EDS and I’ve even been passing out since I was 8 and yet No one has been concerned and keep making up excuses like they have done all they can when I’ve only been for one heart test. That is no where near enough.
I'm heading over to tik tok after this ❤ in the 8 past weeks I was diagnosed with hypermobility ehlers danlos syndrome, gastroparesis and suspected mast cell activation. Finding your channel and support groups has really helped with educating myself and not feeling so alone
im so happy my channel and support groups have helped you. EDS can be very isolating, and it can be really helpful to connect with others who are going through similar struggles
@@IzzyKDNA it is and it is ❤ im 37 and finally finding out what was wrong my whole life has renewed my strength. Thank you for doing these videos
I'm 20, last week I was FINALLY diagnosed, even though I was showing symptoms since I was like 2 years old. One doctor told my mom I had EDS when I was 10, but never cared to document it and other doctors never listened.
10 years of terrible pain and all just to be told by my doctor at the end that I am too old to be treated in physical therapy and all we can do is take pills for the pain (which doesn't work for me) . So difficult
I love your videos! I was diagnosed with EDS at age 53, in Dec 2019. Your videos have been incredibly informative and helpful. Thanks for doing what you do!
I just recently found you, as well as i found a girl on tiktok, who had the same symptoms as me. She was diagnosed with EDS.
I was living in pain my whole life, i was trying to get diagnosed for anything over 15 years ago and my doctors then said i must be facking it or "it just the way you are". Now i know how much of a bulls... it is.
I really hope there will be more awarness of these types of dissabilities and syndromes, so no more kids will have to go through what we had.
I am going to the doctors right now to get my diagnose as soon as possible, but it is expensive as hell.
Wish you all the best!
Hypermobile and going by dental procedures, local anaesthetic doesn't work on me! Until I learned about the link (when I first learned about hypermobility spectrum disorders through you!) I just assumed the anaesthetics were really weak. But like...it's a nerve block so it probably shouldn't be.
Random fact from researching planning in large buildings, accessible stalls aren't just for people living with a disability. They are a stall that are planned for everyone to use, that are also accessible. That's the planned use when calculating number of toilets needed. This is different to a separate accessible bathroom, but this room is accessible to anyone who wants to use it for whatever reason, living with a diagnosed disability or having banged their hip leaving the car and feeling a little stiff. Its not the same as a parking space requiring a placard, it's set aside for anyone who feels like they want to use those accessible features using the bathroom at that moment.
Btw there are some great alternatives to kinesio taping, that work much better w/ my EDS :)
The BodyBraid and ArmBraid, for example, are systems of stretchy straps that provide joint support and enhance proprioception, the way KT does. (Make sure to cover any sensitive skin/scars, as the straps can chaffe.) Additionally, there’s CW-X’s Stabilyx 2.0 Compression Leggings, which have built-in bracing that produce stability and support to your knees and hips. While neither option is particularly cheap, if you want to hike again or be able to stand up for at a concert lol, these are like the holy grail!
And if you wanna try kinesio taping again (I still use it when I sprain an ankle etc), use Skin Protectant wipes beforehand and TacAway wipes to remove the adhesive. Skin Protectant wipes create a barrier between the adhesive and your skin, holding tape/bandages on longer, making it easy to remove w/ just alcohol, and reducing the overall risk of an allergic reaction.
Just wanted to comment and say thanks to you i found out about eds and was officially diagnosed a few weeks ago. :) It also turns out a number of people in my family have it, as well, so I really can’t thank you enough for spreading awareness and creating this content. ❤️
I have EDS. I am 27 and people still reguarly think that I'm in High School. My mom who also probably has EDS but refuses to get tested is 49 and people think that she is my sister. My grandmother is no longer alive but she also might have had EDS, but she was always assumed to be younger than her actual age. People reguarly thought that she was my mom when I was younger.
I'm definitely resistant to anesthetic, as is my mother. We've both been awake during surgery before. My dentist has to use more than twice as much novocaine as he would for a normal person for me to even get some relief. I got really used to controlling my response to pain so that I could "pretend" that I was numb. My current dentist was the first realize that I was faking. He was like "you can feel this?!" I tried to downplay how painful it was and he said "no, you're not supposed to feel this at all. We are GOING to get you numb" and he kept going until I actually had significant pain relief. Fabulous dentist.
My hips pop out of place. My family thought it was for attention for a long time, but I literally can't walk when this happens due to the fact that it is not connected. This is really validating, I think I meet enough criteria for hEDS to see a Dr about it.
Thank you so much for doing these videos it helps me to know I'm not alone in this and I can get the help I need.
Fun video! I have cEDS, POTs, CCI, Chiari, Occult Tethered cord, a spinal fusion from scoliosis, snapping scapula, MCAS, and CVID. I am probably forgetting some things but yeah thats brain fog lol. Yes you are so right that things keep piling up with EDS. I enjoy your channel! Much love.
I have been told I look at least ten years younger since I was in my 20's I am now in my 50's and have been told I look like I'm in my 30's 😁
I'm 35, went to the pharmacy yesterday, asked for help finding a medicine. The pharmacist advised me against it, since it could be dangerous for "kids who are still developing" 😂😂 I mean, my shoulder is separated, and I can't put pressure on my knee, but this kind of stuff is at least a silver twinkle in my days
@@Bridgejonesrox that's awesome but not in that situation! Yikes! I feel ur pain tho so sry!
Considering getting tested for EDS now - I fit most of the criteria I can test myself. I’ve had recurring and sustained muscle/tendon problems and injuries, and just a bunch of other things that my doctors never been able to explain. I know there’s a high chance I’m just hyper mobile, but I’ve only just heard about EDS so I feel it doesn’t hurt to chat to my GP about the possibility. Thanks for sharing your story and chatting about EDS.
I am currently 23 years old and growing up i had a lot of pain and no one really paid any attention to it so i stopped bringing it up until i needed hip surgery for a labral tear in 2018 and afterwards my physical therapist told me about EDS and told me to look into it....I’be had multiple doctors bring it up the past few years and I’m still trying to get fully diagnosed...its so frustrating
Before I had a diagnosis of EDS, I had my wisdom teeth removed and I woke up in the middle and felt most of it. They wrote about it in their journal cause they never saw anything like it. Anesthesia doesn’t work for me.
@S M yeah I also had my tonsils out when I was 6, woke up saw the staff and had a freak out and went off on the staff. Being 6 waking up and and seeing yourself being hooked up to machines is scary. Yeah... I have scars in my arm from the IV to this day and I’m 28. Scared me from needles for life.
@S M I’m so sorry that happened to you. I don’t even have words. Yeah I literally thought they were trying to kill me or something and I throw up every time I go under which luckily hasn’t been too much.
I just got diagnosed a few months ago, glad to have found my people!
At 24 I still have a 'baby face', but my hands! It seems to be common (from what I can tell?) that our hands often look aged, and I swear mine look 10 years older than they actually are.
I recently got a mobility permit for use at uni and I don't use mobility aids - every time I arrive and park in the accessible parking, I just get so anxious. I can see people looking at me, and fortunately no one has approached me (or damaged my car, which I've heard of happening to others), but I'm fearful of the day that it happens.
It's really tough as I'm also doing an ecology degree, and some days I can do longer walks; so I often feel guilty over not being in 'enough pain' to feel worthy of receiving a permit, but also being in 'too much pain' to be getting a degree where ableism is very common and people struggle to understand why I'm taking it if I can't access all the sites other ecologists can.
To anyone looking for the zip up shoes the brand is Billy Footwear.
I've had poeple ask me if I'm faking, because i moved my brace forom one knee to the other..ugh
As a ballerina & contortionist from 1980-2009 (forcefully retired due to a horrific stage injury) with weird issues & injuries, I chased that EDS Dx once I heard of it in 2013. My gaslighting PCP & cronies from 1995-2020 were fired by me once I got to the geneticist. 7/2/2020 changed my life at 45yo. Since then both of my parents (in their 70s) were Dxd. In 2020, we discovered my dad passed down COL1A1, VUS. In 2022, we discovered my mom passed down a pathogenic COL4A4 gene. That explains a ton of my issues, hers, & her relatives for generations. I got a double whammy for everything. Even neurodiversity.
I got diagnosed with EDS type 3 in July this year and I got diagnosed with POTS a few weeks ago. It took me 12 YEARS to get my diagnosed of EDS. Some doctors still think I'm "faking it" I no longer see them.
Ugh, I can relate to the local anesthetic part sooo much, some time ago I had almost 20 stitches put on my knee with just two not working injections, but the doctor was convinced that if it's not working at the moment then it will start in a few minutes. Well, it didn't 😂 also, great video, very relatable
Izzy, I am just now finding out I have EDS and probably would t have known if my son hadn’t been diagnosed several years ago. He is 10 now and he and I deal with all of this together. He has had many many many medical issues since birth but he has made it his mission to enjoy life. Anyways, I loved watching this video because it is nice to see that we aren’t alone and there is still so much to figure out. Prayers to you and if you pray, send some our way! Sending LOVE ❤️
In just chillin here at 12 a.m. While not being able to call asleep because my joints hurt
Took 45 years of medical trauma and neglect to get a diagnosis.. I'm 50 and finally getting treatment
The physical therapist says I have EDS but I’m not sure? I know my pain is all over the place and I ignore it because I can’t stop my life everytime my hip pops out of place and and sometimes it burns and turns red afterwards, sometimes it doesn’t, sometimes popping my hip in and out causes no pain. Sometimes I can’t balance at all on one leg. I’m had so many people say, “you don’t look like you’re in pain, you’re not crying” sorry I don’t look how you want me to when I have shooting nerve pain down my legs
My father some days has to use a wheel chair or a cane but some days he can walk normally or is bed bound he doesn’t have this (disorder?) but he was in a b-52 crash in the air force and she shattered all his disks in his spine we are happy to still have him with us :) but it just come to show just because someone doesn’t have a certain disorder or doesn’t use a type of mobility one day that they did the other doesn’t mean their faking what their doing :) also love your video!❤❤
We are allowed to use medical devices no matter what chronic conditions we might have. But thanks for helping make these videos they are so helpful. I'm disabled with chronic illness and still working on more diagnosis have gastropreasis and might have pots but still working on that I had a bad allergy reaction to the heart monitor and so can't get one to use it so they are finding other options open to test for it. ❤
Disabilities are not always visable as I have learned
My daughter has really bad fibro and asthma... she needs her disability car tag and mobile shopping carts. Breathing is necessary and the pain is real. Not all disabilities are visible. 💗 love your video
I get out of my car after parking in an accessible spot, I get stares… unless I’m using my cane. And then some people just laugh because I’m fat. I avoid using the motorized carts at grocery stores even when I’m hurting bad for the same reasons
I didnt realise the tape allergy was an eds thing. Ive had allergy type reactions to so many tapes and only now connected the dots.
Fellow zebra in a dazzle here. Thank you for educating people on what we go through
I only got my eds diagnosis a few years ago, and I'm still learning that issues I struggle with have been symptoms this whole time!
I had two hand surgeries under local. Let me tell you, it was wild. I was hysterically crying and they did nothing
On the couch today with another neck dislocation. Thanks for doing this! It makes me feel better
This was so relatable! It took 12 years to get my EDS diagnosis.
I never knew the thing about local anesthetic!!! It has never worked on me, I would be screaming during the procedure and the doctors said I was being dramatic. I was like NO I FEEL EVERYTHING. OMG.
YIKES omg im sorry. well, im glad that maybe you know why now
When I felt my entire C-section and thought I was going to pass out from the pain and my obgyn didn’t believe me 🙃
Thank you so much for this. I will agree with your friend, creating a Tick Tock for EDS would be great!
Local anesthetic not working has a lot to do with the ‘lose skin’/collagen of the skin, as for health people the local anesthetic injected will stay just at the place where it is injected keeping that part numb, but with EDS it spreads to a way larger area and therefore it doesn’t work the way it should. Usually it does work when getting a larger amount of local anesthetic, but it still wears of faster than in healthy people.
The anesthetic used at the dentist is usually a different one than in hospital, so that’s why it usually does work at the dentist (and you can totally ask them to use that one for other procedures).
If you feel like starting a TikTok about EDS (and HSD, don't leave us out, please) that would be awesome. Oh! And could you maybe link the tiktok accounts from the video on the description? ☺️
You told me something I hadn't heard before and I'll have to look into as I am severely "allergic" to basically all antibiotics, steroids, and have external and eventually internal hives (they blow up my intestines and it feels like little critters are moving around inside them and the pressure is so severe that it makes me vomit, etc) and they haven't been able to figure out why I'm so hyper sensitive. You mention some with EDS have this hypersensitivity issue to the tape (which I completely had hives from it and it took like 2.5 weeks for the reaction to leave after I removed it). So thanks for mentioning that extra issue some have. I'm newer to diagnosis so haven't heard of a lot of the intricacies of a very complicated syndrome yet.
I was diagnosed yesterday and this helped a lot thank you
Hi I love your VIDEOS and your CHANNEL!!🥰I started watching you recently when I had my most recent 3 Knee surgeries for my arthritis and genu valgum .Keep making great videos 👏👏🙂❤
Thank you!! I hope your knee surgeries have helped whatever symptoms you were experiencing before with your arthritis and genu valgum
My physio really told me my joints are hyper mobile, but that's not a diagnosis and not to worry about it, when I'm literally in pain everyday and my rib subluxes from just a hug 😑
Seeing things about EDS makes me just want to cry so hard. I KNOW I have it. I’m under investigation for pots and am in pain every single day and get dislocations and subluxations often. It’s taking so long for medical professionals to listen to me. It’s been over 4 years since having issues with my heart and they’re only just looking into pots. They kept blaming my anxiety. Also, been in and out of hospital and physio for my joints since I was 12 years old. I was told back then I was hyper mobile but that it would get better as I got older… it’s gotten so much worse. I’m 22 as of now (although I look 15) and also suffer with gastrointestinal issues along with other things. I feel so dumb in public because a 22 year old shouldn’t have mobility issues like I do. It’s embarrassing and frustrating as I cannot do the things I need to. Not having a diagnosis makes it tricky too as I can’t just say I have Eds, or a disability. It’s debilitating.
It's so refreshing to watch this video
I had to pause the video just to come comment while you were talking about mobility aids. I am 50 years old and have affected by EDS, POTS, MCAS, migraines, hashimoto's, gastroparesis and narcolepsy since I was in middle school. (there were signs of some of my issues earlier, but things got worse when puberty started)
At this point in time for mobility aids depending on how I feel that day I could be wearing leg braces and walking with my service dog wearing his custom Bold Lead Designs mobility harness ... or I could be using my walker... or I could be using my manual wheelchair... or I may just need my custom full power wheelchair...
(sadly, I need the full power wheelchair often enough that we finally had to buy a mobility van to carry it)
The idea that someone might think I was faking or "wasn't disabled enough" for any of my mobility aids would infuriate me!! Just because I can have good days does not, in any way, negate my bad days.
People are so uneducated.