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 :(
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!
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.
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'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.
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.
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.
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. ❤
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.
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.
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. 🦓💪🍀
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.
@@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”.
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!❤❤
I unconsciously always used the handicapped stalls because it was the only stall that didn't make me super anxious 😅 I feel bad when people remind me it's for the disabled
Not me casually watching this and seeing myself @ 8:22 🤣 true story - as I hold the position for the store’s inclusion and diversity representative for the company I’m advocating for it to say disability or disabled stall. As a lot feel that is more inclusive 😊
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.
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 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
1:36!!! I have to use the elevator at school because I have pots Eds etc. some time I just walk down the stairs with my class. Kids will be like your faking you don’t need the elevator I’ve seen you take the stairs before. Once I was in class one the floor about the pass out and all the kids were looking at my lying on the floor silent while the teacher is teaching and every one is whisper what’s wrong is she ok. One kid just said and I quote, “She fine”. once I got up I wanted to rip the kids head ooff
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!!
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 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.
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 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. 😀💜🌈
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 thought finally having a diagnosis would help me. I thought I would finally be listened to. I have Ben called a liar, drug addict, hypochondriac, malingerer, manipulative. I have been told I am over exaggerating or I’m just sensitive to pain (low pain tolerance.). I have been told that I was too young to have this or that problem. I have been told I am just wrong (about how I feel and what’s happening in my own body.) I have been told EDS isn’t a big deal by an EMERGENCY ROOM doctor. I have been told “nothing is wrong with you!” All of this has happened AFTER my diagnosis which didn’t happen until I was 41. That diagnosis took 4 years of me pestering and pestering my doctors at the VA to send me to a specialist. Once I got the letters added to my “identity”, I thought things would get easier. I refuse to go to the VA er anymore. I am terrified I will die because I ignore 99% of my pain no matter how excruciating it feels. I have sublaxed both hips, both shoulders, both thumbs, fingers, toes, both knees, ribs, shoulder blades; all without seeing a doctor. I have had 5 children (3 naturally with no drugs) and yet I still have doctors tell me I “just can’t handle a little pain.” Thankfully now days I have a private doctor I pay for myself and she is wonderful. She never dismisses me or any concern I have. My dentist is married to a woman with classical eds, he is also a godsend. Can’t tell you how many dentists will not believe a patient when they say quite plainly that novocaine does not work. My current dentist became my dentist when his colleague wouldn’t listen and she tried to begin before I was numb. I almost punched her. He never doubted me and uses a Caine that is meant to last 12 hours. I burn through it in less than 2. My PT has other Eds patients and she has taught me so much so I can take better care of myself. She was the first PT to treat me like a person and not a problem for not getting better on time. Going through 42 years of not being trusted takes a toll. I want to move from my city due to rising rents but I am literally terrified of losing my doctors. It’s sad when a person must choice between decent health care and a decent place to live.
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"...
Hello. I am 53, but people think I 'm 40, 45. I was diagnosed at 47!!! 3 doctors explained to me that my squeleton's age is like a 80 year old. At 6 I began to have discomfort, then pain appears when I was a teenager. I begged my parents to take off my legs. My mother used to say' of course you're in pain, you're always in pain so it's normal '. At 18,as an adult, began my medical wandering. It was in the 80's. My joints get stuck very often (my jaw stucks a few days during the oral exams at university), my hip couldn't move when I want to stand up from a chair, almost every day, (it' s very awkward, when I have to smoothly slide on the floor at the end of weekly meetings for example, and make a lot of weird things with my hip and leg to finally be able to get up). There is no specialists of EDS in Belgium and even physiotherapist don't learn anything while studying. So I often get angry when a rheumatologist or algologist don't want me to use braces, because muscles would get weaker. And I become tired of all those people judging when I use a parking place for disabled, when I walk normally and suddenly I get very pale, shaking, dizzy and I took the canesfrom my bag (they can bend). And I may not look that sick, because when I am, I stay home. I was also diagnosed with asperger 'syndrom at 39. I really like to know more about this double diagnosis. It looks more often than I thought.
i remember one time in the ER i needed several stitches on my arm. i had gotten local anesthetic before for stitches and it did NOT work. it worked directly in the spot they placed it and it didn’t seem to spread throughout my tissue. i was also told i have very fibrous tissue with my EDS (my skin is also extremely stretchy in certain places more than others). the first two stitches were fine, the rest were EXCRUCIATING. i was telling him it was so painful but he didnt believe me and kept going. i believe when those us with EDS who also have that fibrous tissue, the anesthetic spreads around those harder tissue spots that you can feel under the skin. i always was anxious about breast cancer because my tissue EVERYWHERE was lumpy like they always describe!! i have a feeling it just isnt able to distribute evenly because of the tissue. that’s just my theory though!!
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 😑
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 am not diagnosed yet but i like watching these and comparing because I relate to a lot of these and I’ve been doing a ton of research. I related to the tape thing i deal with the same thing with bandaids.
i've had symptoms related to EDS since I was a child, but only recently did anyone tell me it could've been EDS. I had a friend whose sister had very severe EDS and she basically cared for her all of her teen years, and when I was complaining about only *some* of the stuff I was experiencing, she told me it was an exact replica of what her sister dealt with and she was convinced I had EDS. I brushed it off because I didn't want to have a disability that has a huge lack of education around it, but also, I didn't even know where to start getting testing and help for it. But the more I watch these videos, the more I feel like people with EDS are the only people who experience my world, and I really do want testing for it. Unfortunately, I doubt I'll ever get tested because every healthcare provider I have talked to says they don't know enough about it to care.
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
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 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 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
🧐 To all suffers out there... Screw those people! You don't owe them anything! They aren't living your reality or paying your bills! And don't worry about what they say or think, just live your life and love yourself, and the body you're in and do what's best for you and your body.💖🌟💪🖖
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.
SO TRUE! Can't tell you how many people think I'm faking b/c I don't use my cane 24/7. Parents think i should toughen up... Get evil looks from people when parking handicap/ using motorized cart. Daughter doesn't want to be seen with me. Siblings don't talk to me. Definitely look younger than my age; native ancestry helps with that also ; )
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 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.
My ribs have dislocated all of my life. My parents just thought it was a weird gross thing. I had no idea what they were doing and just popped them back in. Even a tight hug can do it. I've walked around on subluxed ankles or with subluxed wrists for months with no idea WHY they were hurting. I had stretch marks at nine despite always being skinny. My hips dislocate constantly. For some reason they never thought any of it was worth taking me to a doctor. I was medically gaslit by doctors and adults to the point I started gaslighting myself about my constant pain and convinced myself I was just a wimp. Now at almost 30 I'm just realizing that it's not just me and there are others who experience the same. Ive always felt bad forbeven considering using a scooter or sitting at the store. I have POTS. I'm currently fighting to find a doctor to test for hypermobility or EDS. Maybe one day I'll get real answers but for now just knowing I'm not alone and I'm not crazy is so comforting.
Recently (as in, within the last few days) it's looking like I might be developing an allergy to certain adhesives. Already diagnosed hEDS and POTS; been wondering for several years if some level of MCAS is also part of my story (haven't been tested yet b/c never had issues with allergies growing up, and the only allergy testing I've had done wasn't even a relevant panel).
It's funny how easily people can forget EDS exists, before I knew I had it I had always had the normal hypermobile joints and i occasionally had some injuries, but POTS really came in like a truck when I tried working at amazon for my 3rd job, I eventually had to quit because not only was I not getting much sleep, my blood pressure just going nuts from standing all day, doctors had no idea why my BP would just skyrocket randomly lmao
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.
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!
I have EDS+POTS and have extreme tolerance to Local Anesthesia & Pain Medication, let me tell you, it definitely sucks hard and is indeed horrible as you say. Just finding a dentist that will knock me out is near impossible where I live and getting surgery or dentistry done without anesthesia is pretty much torture. I've had two ingrown toe nail removed without it and a few dentist visit where I felt everything and I never want to do that again.
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
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!
the lack of tolerance to local anaesthetic is literally horrible! I had 5 shots of local for a single tooth removal and could still feel everything with painful pins & needles :’) I need another tooth out now too, not excited for that! got a diagnosis 2 days ago after 6 years of asking for a referral! might actually get knocked out hopefully
Oh its so annoying. Had someone mad at me because "oh you can walk huh?" I am physically sometimes capable of dragging myself, so no my legs aren't paralyzed. Is my heart all working and can my brain always communicate well with my pain filled body? noo. And I'm soo tired" But I should probably just push myself until breaking and not ask for help? How dare I care for myself! I mean, no one should have to stand for hours or walk for a long time when they're in pain or can't well. The answer doesn't have to be to add more pain to our lives :(
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'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 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.
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 lately found out about EDS, and am in the searching mode. I don't know if this is what's going on with my health, and the worst thing is that making official tests will cost me about 3k. For now, I'm making notes and check the things that I experience and hope I will be able to go to doctor soon. If it really is EDS, then I would like to know as soon as possible.
Just the other day some older lady scalded me for using the motorized carts. so I just went along with her, pulled my foldable cane from my bag; took a few steps before my hip dislocated. I got to use the cart
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
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.
THE NOVOCAINE THING! I’m in the process of diagnosed and they asked about local anesthesia but I’ve never had it so I didn’t know how to answer the question, but they always have to give me more novocaine! They told me it’s because I’m a redhead 😂 good lord
holy crap! the whole "looking younger" thing, I had no idea that was something related to eds! I've suspected I have it after tons of extensive research, but I don't have super extendible(?) joints or super stretchy skin, but I have many many other symptoms.
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!
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.
I’m 38 and it took me till I was 37 to get diagnosed…😯 No one ever believed me. I’m not believed either that I’m my age either! I didn’t know this was EDS related! (I have hEDS).
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.
I got my dx at 40.. I was having symptoms from preschool age… As far as the age one goes, I’m told all the time I look like I’m in my late 20’s- early 30’s..
🦋Please subscribe to help out my channel and learn more about EDS, POTS, and genetics! 🦋
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.
6:30 I just got diagnosed at age 30, the damage is already done I suppose
❤ I loved this. Thank you!
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 :(
7:44 ITS TRUE AND ITS REAL! I’m 20, and every time someone knocks on my door and I open it, they say “are your parents home” SIR I AM AN ADULT-
Ha, ha, almost 60 now but when I was about 25, at the train station they proposed me a train tickets for teenagers :-)
Thank u so much! hugs from Brasil!
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!
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 (
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.
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'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.
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.
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.
this was happy. thanks.
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. ❤
Watching these is so therapeutic… I feel so validated that everyone else with EDS is depressed about it too.
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.
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.
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
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.
Please start one omgggg
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.
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!❤❤
I've had poeple ask me if I'm faking, because i moved my brace forom one knee to the other..ugh
I unconsciously always used the handicapped stalls because it was the only stall that didn't make me super anxious 😅 I feel bad when people remind me it's for the disabled
I have EDS and use a wheelchair. I think using it due to anxiety is fine and fair. I’d advise trying to ignore them!
Not me casually watching this and seeing myself @ 8:22 🤣
true story - as I hold the position for the store’s inclusion and diversity representative for the company I’m advocating for it to say disability or disabled stall. As a lot feel that is more inclusive 😊
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.
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 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
Disability is quite variable. Don't think about what others think. That is the primary problem.
I love your videos so much!
1:36!!! I have to use the elevator at school because I have pots Eds etc. some time I just walk down the stairs with my class. Kids will be like your faking you don’t need the elevator I’ve seen you take the stairs before. Once I was in class one the floor about the pass out and all the kids were looking at my lying on the floor silent while the teacher is teaching and every one is whisper what’s wrong is she ok. One kid just said and I quote, “She fine”. once I got up I wanted to rip the kids head ooff
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!!
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 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.
Please do start one. I'm sure that your Tik Tak is not stupid? If you have one it is very smart. Thanks for this good video.
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.
In just chillin here at 12 a.m. While not being able to call asleep because my joints hurt
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. 😀💜🌈
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.
your vidoes are amazing i have myopathic EDS and finding creators on certain platforms is hard to do
I thought finally having a diagnosis would help me. I thought I would finally be listened to. I have Ben called a liar, drug addict, hypochondriac, malingerer, manipulative. I have been told I am over exaggerating or I’m just sensitive to pain (low pain tolerance.). I have been told that I was too young to have this or that problem. I have been told I am just wrong (about how I feel and what’s happening in my own body.) I have been told EDS isn’t a big deal by an EMERGENCY ROOM doctor. I have been told “nothing is wrong with you!” All of this has happened AFTER my diagnosis which didn’t happen until I was 41. That diagnosis took 4 years of me pestering and pestering my doctors at the VA to send me to a specialist. Once I got the letters added to my “identity”, I thought things would get easier. I refuse to go to the VA er anymore. I am terrified I will die because I ignore 99% of my pain no matter how excruciating it feels. I have sublaxed both hips, both shoulders, both thumbs, fingers, toes, both knees, ribs, shoulder blades; all without seeing a doctor. I have had 5 children (3 naturally with no drugs) and yet I still have doctors tell me I “just can’t handle a little pain.”
Thankfully now days I have a private doctor I pay for myself and she is wonderful. She never dismisses me or any concern I have. My dentist is married to a woman with classical eds, he is also a godsend. Can’t tell you how many dentists will not believe a patient when they say quite plainly that novocaine does not work. My current dentist became my dentist when his colleague wouldn’t listen and she tried to begin before I was numb. I almost punched her. He never doubted me and uses a Caine that is meant to last 12 hours. I burn through it in less than 2. My PT has other Eds patients and she has taught me so much so I can take better care of myself. She was the first PT to treat me like a person and not a problem for not getting better on time. Going through 42 years of not being trusted takes a toll. I want to move from my city due to rising rents but I am literally terrified of losing my doctors. It’s sad when a person must choice between decent health care and a decent place to live.
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"...
Hello. I am 53, but people think I 'm 40, 45. I was diagnosed at 47!!! 3 doctors explained to me that my squeleton's age is like a 80 year old.
At 6 I began to have discomfort, then pain appears when I was a teenager. I begged my parents to take off my legs. My mother used to say' of course you're in pain, you're always in pain so it's normal '. At 18,as an adult, began my medical wandering. It was in the 80's. My joints get stuck very often (my jaw stucks a few days during the oral exams at university), my hip couldn't move when I want to stand up from a chair, almost every day, (it' s very awkward, when I have to smoothly slide on the floor at the end of weekly meetings for example, and make a lot of weird things with my hip and leg to finally be able to get up).
There is no specialists of EDS in Belgium and even physiotherapist don't learn anything while studying. So I often get angry when a rheumatologist or algologist don't want me to use braces, because muscles would get weaker.
And I become tired of all those people judging when I use a parking place for disabled, when I walk normally and suddenly I get very pale, shaking, dizzy and I took the canesfrom my bag (they can bend). And I may not look that sick, because when I am, I stay home.
I was also diagnosed with asperger 'syndrom at 39. I really like to know more about this double diagnosis. It looks more often than I thought.
i remember one time in the ER i needed several stitches on my arm. i had gotten local anesthetic before for stitches and it did NOT work. it worked directly in the spot they placed it and it didn’t seem to spread throughout my tissue. i was also told i have very fibrous tissue with my EDS (my skin is also extremely stretchy in certain places more than others). the first two stitches were fine, the rest were EXCRUCIATING. i was telling him it was so painful but he didnt believe me and kept going. i believe when those us with EDS who also have that fibrous tissue, the anesthetic spreads around those harder tissue spots that you can feel under the skin. i always was anxious about breast cancer because my tissue EVERYWHERE was lumpy like they always describe!! i have a feeling it just isnt able to distribute evenly because of the tissue. that’s just my theory though!!
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 😑
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 am not diagnosed yet but i like watching these and comparing because I relate to a lot of these and I’ve been doing a ton of research. I related to the tape thing i deal with the same thing with bandaids.
My parents finally acknowledged that all my joints are loose. And i knew for a while
i've had symptoms related to EDS since I was a child, but only recently did anyone tell me it could've been EDS. I had a friend whose sister had very severe EDS and she basically cared for her all of her teen years, and when I was complaining about only *some* of the stuff I was experiencing, she told me it was an exact replica of what her sister dealt with and she was convinced I had EDS. I brushed it off because I didn't want to have a disability that has a huge lack of education around it, but also, I didn't even know where to start getting testing and help for it. But the more I watch these videos, the more I feel like people with EDS are the only people who experience my world, and I really do want testing for it. Unfortunately, I doubt I'll ever get tested because every healthcare provider I have talked to says they don't know enough about it to care.
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!
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 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 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
🧐
To all suffers out there...
Screw those people! You don't owe them anything! They aren't living your reality or paying your bills!
And don't worry about what they say or think, just live your life and love yourself, and the body you're in and do what's best for you and your body.💖🌟💪🖖
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.
SO TRUE! Can't tell you how many people think I'm faking b/c I don't use my cane 24/7. Parents think i should toughen up... Get evil looks from people when parking handicap/ using motorized cart. Daughter doesn't want to be seen with me. Siblings don't talk to me. Definitely look younger than my age; native ancestry helps with that also ; )
I had two hand surgeries under local. Let me tell you, it was wild. I was hysterically crying and they did nothing
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 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.
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 🙃
My ribs have dislocated all of my life. My parents just thought it was a weird gross thing. I had no idea what they were doing and just popped them back in. Even a tight hug can do it. I've walked around on subluxed ankles or with subluxed wrists for months with no idea WHY they were hurting. I had stretch marks at nine despite always being skinny. My hips dislocate constantly. For some reason they never thought any of it was worth taking me to a doctor. I was medically gaslit by doctors and adults to the point I started gaslighting myself about my constant pain and convinced myself I was just a wimp. Now at almost 30 I'm just realizing that it's not just me and there are others who experience the same. Ive always felt bad forbeven considering using a scooter or sitting at the store. I have POTS. I'm currently fighting to find a doctor to test for hypermobility or EDS. Maybe one day I'll get real answers but for now just knowing I'm not alone and I'm not crazy is so comforting.
Love this! Hope you do tik toks like these
And a part 2! 🥺
heheh thanks!!
Recently (as in, within the last few days) it's looking like I might be developing an allergy to certain adhesives. Already diagnosed hEDS and POTS; been wondering for several years if some level of MCAS is also part of my story (haven't been tested yet b/c never had issues with allergies growing up, and the only allergy testing I've had done wasn't even a relevant panel).
It's funny how easily people can forget EDS exists, before I knew I had it I had always had the normal hypermobile joints and i occasionally had some injuries, but POTS really came in like a truck when I tried working at amazon for my 3rd job, I eventually had to quit because not only was I not getting much sleep, my blood pressure just going nuts from standing all day, doctors had no idea why my BP would just skyrocket randomly lmao
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.
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.
😔
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!
I got diagnosed at 23 after having health problems all my life. It’s so wild how long it takes sometimes.
There is another podcast about Heds.
It called Fantastic pains and how we hide them.
I have EDS+POTS and have extreme tolerance to Local Anesthesia & Pain Medication, let me tell you, it definitely sucks hard and is indeed horrible as you say. Just finding a dentist that will knock me out is near impossible where I live and getting surgery or dentistry done without anesthesia is pretty much torture. I've had two ingrown toe nail removed without it and a few dentist visit where I felt everything and I never want to do that again.
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
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!
the lack of tolerance to local anaesthetic is literally horrible! I had 5 shots of local for a single tooth removal and could still feel everything with painful pins & needles :’) I need another tooth out now too, not excited for that!
got a diagnosis 2 days ago after 6 years of asking for a referral! might actually get knocked out hopefully
I use baby oil to remove tape painlessly it works great
Oh its so annoying. Had someone mad at me because "oh you can walk huh?"
I am physically sometimes capable of dragging myself, so no my legs aren't paralyzed. Is my heart all working and can my brain always communicate well with my pain filled body? noo. And I'm soo tired"
But I should probably just push myself until breaking and not ask for help? How dare I care for myself!
I mean, no one should have to stand for hours or walk for a long time when they're in pain or can't well. The answer doesn't have to be to add more pain to our lives :(
Invisible disability ughhh 😅
I realize that most people are dealing with health issues at some point in their lives but chronic illness is a BUMMERRR
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.
Hi Izzy! So nice to see you again! xxxxxx
I was diagnosed with Heds 8 years ago and I am 47 now and I'm always told that I look younger than I am.
how is EDS diagnosed?
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 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.
Love this Izzy. Thank you for sharing it.
Thank you!!!
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 lately found out about EDS, and am in the searching mode. I don't know if this is what's going on with my health, and the worst thing is that making official tests will cost me about 3k. For now, I'm making notes and check the things that I experience and hope I will be able to go to doctor soon. If it really is EDS, then I would like to know as soon as possible.
Just the other day some older lady scalded me for using the motorized carts. so I just went along with her, pulled my foldable cane from my bag; took a few steps before my hip dislocated.
I got to use the cart
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
They have to inject a lot of local anesthetic for it to work with me, the numbing gels just don't cut it
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.
THE NOVOCAINE THING! I’m in the process of diagnosed and they asked about local anesthesia but I’ve never had it so I didn’t know how to answer the question, but they always have to give me more novocaine! They told me it’s because I’m a redhead 😂 good lord
I’m almost 46 and sometimes it shocks people
holy crap! the whole "looking younger" thing, I had no idea that was something related to eds! I've suspected I have it after tons of extensive research, but I don't have super extendible(?) joints or super stretchy skin, but I have many many other symptoms.
also just to give an example, tell me by my profile photo if I look old enough to have a 14yr old daughter lol
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!
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.
I’m 38 and it took me till I was 37 to get diagnosed…😯 No one ever believed me. I’m not believed either that I’m my age either! I didn’t know this was EDS related! (I have hEDS).
I have heds and I've had 5 kids and i don't experience the inability to move that most people get with epidurals i can literally get up and walk
"You're too young to be tired."
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.
Disabilities are not always visable as I have learned
I got my dx at 40.. I was having symptoms from preschool age…
As far as the age one goes, I’m told all the time I look like I’m in my late 20’s- early 30’s..