ฝัง
- เผยแพร่เมื่อ 30 เม.ย. 2019
- Ehlers-Danlos syndrome, hypermobile type is a connective tissue disorder that affects approximately 1 in 5.000 people. This is a video explaining the most important characteristics of this condition.
Sources:
The 2017 EDS Classification - American Journal of Medical Genetics Part C: Seminars in Medical Genetics
American Academy of Allergy Asthma & Immunology - Mast Cell Activation Syndrome
The information in this video does not substitute for the advice of a medical professional.
Background music: bensound.com
Does anyone else wonder if the depression and anxiety (chronic and debilitating for me) come from the fact that we live in constant pain and have to learn to be okay with that?
Yes, definitely, it's kinda like the chicken and the egg, isn't it? But, I do think that there is absolutely just stress from living with constant pain. For me, my pain and symptoms/issues started in 2005...it took me 18yrs to even hear about EDS, POTS, & mast cells. I saw tons of docs (neuros, Pain docs, rheumatologists, lymes specialists, etc), you name em , I probably saw em. Lots of exams, tests, scans, but everything was always normal, except in office exams for things like reflexes, etc. I was told a couple times that it probably was psychological... Which certainly doesn't help stress/anxiety. You're in pain, your body is clearly not right, but the doctors you see for help can't help... I know I got to the point where I did question my sanity... Was I doing this to myself some how, some way? I couldn't imagine why I would. I had an amazing career that I loved, indepence, I never wanted to lose any of that... But I did because of my health issues. I'm so glad I met my current pain management doctor. He knows about EDS, he's the one who told me about it. He recognized it in me immediately. So, yes, living in constant pain for sure can beat you down. I worked with a pain psychologist. I typically am not super excited about the idea of seeing a "therapist", but pain psychologists are different. She helped me chart different things I was struggling with... First migraines, then sleep. From her help, I was able to really pin point my migraine triggers and symptoms (some things I thought were "triggers", like smells, where actually a sign I was already starting the migraine and I should take my abortive (for me I get extremely sensitive to light, sound, smell, so when a smell bothers me badly it's bc my migraine is starting and has amped up my sensitivity). That helped a ton for managing and in talking with my migraine specialist. Same in figuring out my sleep schedule and such. We would set goals for me to work in each week. I found it quite helpful and she gave me some strategies for ways to try to manage the pain and stress. So, I definitely recommend. 🤷♀️
Absolutely !! ❤️
Also, great advice! Sounds like guidance to what should be my new specialty…
@@010101Be😊👍
I have ehlers danlos hypermobile from my mum and it’s so hard to explain to people. They always just say ‘oh so your double jointed’ I have the symptoms like chronic back neck and knee pain. I have problems with bladder control and get very dizzy a lot of the time when I stand up. I also have very clicky joints and I often dislocate my fingers and knees. I also get heartburn and I also have long fingers and arms. It’s really frustrating because no one really understands. Most people don’t realise how serious it is and just think that I’m a bit more flexible than usual and that I get a pit of back pain. This video perfectly describes the condition and there should be more awareness about this 👍👍
Know the feeling, or when you are selective in the job you wanna, gotta do. Because your body can't handle heavy, repetitive jobs. Friends call you picky, lazy....😢
Totally get you, people often tell me to "just be brave" and they don't understand when i tell them that i am in constant pain or that i cant walk long distances or when i injure myself people think I'm just exaggerating
I explain it to people as for them to imagine their house was made out of Styrofoam, it might look okay but it's actually falling apart and breaking down rapidly and a dangerous unsafe structure lol..Tthat's pretty much what happens with faulty collagen, and we live it everyday not knowing 'what's going to be broken or not working properly today' much love everyone:) 🦓🦓🦓
@@sparkcakes I am sorry, know in your heart you are Not! We would do more if we could do more and it's not our fault that we can't. It's hard for able-bodied people to understand but there are every once in awhile very empathetic people that will make a special effort and those are the friends to have 💛:) also let us never forget we have each other as a community, and also the greater community of CRPS, A. Spondylitis, adhesive arachnoiditis, fibromyalgia MS pain Warriors that also understand our pain, struggles and will be our friends without judgment:) I have met some of the most amazing people on this planet through message boards, I hope this helps💛🦓🦓
I have very similar symptoms and the same problems with people not understanding.
I have EDS. CPS and Fibro I agree it is difficult trying to explain especially to
GPs who havent a clue. I was lucky to find a consultant who knew straight away just by looking at me what was wrong with me after years and years of pain. Being made redundant from work through ill health made to feel inadequate and now fighting a system that doesnt care about the sick. Every day is a struggle try telling that to those who google EDS they haven’t a clue. Hello to all those on here who know how hard it really is 👋🏻❤️
I'm the one usually telling the doctor how it goes , what it causes
Hi. I know , just like you how hard it is ..it's crazy hard ,everyday resents a new combo of things you need to deal with , the next day it's something completely different..same but different , I hope you are well.
I actually went back to the private consultant last week as I have been having a rough time. He offered me more medication as I had stopped my pain medication last year as the aide effects of pregablin where horrific so I have been on none and have been using ‘other’ methods should we say. I now have quite bad restless leg syndrome. I have dropped to the lowest weight I have ever been and I have literally become a semi vampire. He has requested I see a
Cardiologist as he believes I may have POTS as this breathlessness is not subsiding I have now have high BP its all too much. I am also peri menopausal too which was happening way way back just nobody believed me. My hair is falling out at the rate I am actually petrified to touch it. I went and had it all cut off this week even my hairdresser was shocked 😞 so Im booked in for more blood tests. Booked in to see neurology as my migraines have become a daily problem that even triptans cannot keep up with. Life has become quite debilitating.
I hope everyone else here is coping and that if anyone has any pointers please send them my way. Im now alone as my partner of 22 years decided it was all too much. I cannot blame him its too much for me. I hope everyone here is having a good day today or a day thats better than yesterday. Takecare 💚
#Collagen heals literally ketosis kept you alive. There are these conundrums medical science can't fix a phenotype that will over react to any fiber or vegetation consumed
Any vegetables and any plant matter or derivatives should be avoided.
#carnivoreCure @nutritionwithJudy
#DrDominicDagostino #ketosis expert
#DrDaleBrenesen fat #altzimers expert
#DrDonaldLayman #protein expert
#DrThomasSeyfried #cancer expert
#DrJasonFung #intermitentfasting
#DietDr #metabolicMind #meatheals
#DrShawnBaker #carnivoreDiet
#Revero #reindeerherdsman
#transhumancy #regenerativeAgriculture
#richardPerkins #dutchFarmers
#savoryInstitute #charlieFoundation
There are many experts trying to find the #properHumanDiet #DrKenBerry
#LiesMyDoctorToldMe
#DrBenBikman #whyWeGetSick
#DrBoz #AnyWayYouCan #keto
#DrRobertKiktz #Pcos
#DrHoltz #biohackers even though the hackers describe these HITECH vitamins and substances they consume and they are pushing more plant based vegan eating MOST ALL the substances they use are beef byproduct derivatives .
All those nutrients you will find in a piece of meat specially beef, bison or deer meats and from it internal organs of these animals especially the livers.
#Phenotypes
Type 1 diabetes, Gastroperisis, glaucoma
Cancer, altzimers, brain tumors epilepsy multiple echlerosis ,muscular dystrophy, dysplasia etc etc. Specially when people find no solution it seems to be based on these anomalies of condition that no one can explain. It's been proven it's not in the human genetics but the nutrition is able to change gene expression and species specific nutrition is what will help these condition when they occur. The whole of the earth is a #fooddeserts and I'm sure the #fertileCrescent is misrepresented.
People in deserts, forests, jungles, and frozen tundras and mountain tops must hunt herds of animals in order to survive.
#AmericanIndianReservation
#metabolicHealthSummit
#ketoCon #LowCarbDownUnder
#LowCarbUSA #TimFerris
#PeterAttia biohackers #levels
#pulse #longevityProject
Good luck finding your solution. Just know that what heals your brain is also good for the body. God bless!
The estimated occurrence of EDS due to mis or underdiagnosis is that it may be a 1 in 500 problem. I have EDS, Fibro, Sjogrens, osteoarthritis, and hypothyroidism. I FINALLY found an EDS specialist, and EDS trained Physical therapists. Now I'm trying to correct issues that have been caused in my body through those misdiagnosis. I had a shoulder with a torn tendon and muscle for 28 YEARS that was finally repaired after being ignored for that length of time. The surgeon said that unfortunately BECAUSE we have EDS, we may be able to use an injured joint that needs attention, so it *Is* ignored (because we can use it!) until it gets to the point that the damage is so severe it can no longer be ignored. I've had this stuff my entire life, and it was "growing pains", "strained muscles", "double jointed" and other simple issues that never got better. Had I received a diagnoses sooner than 3 years ago (you may not be diagnosed until 40s, 50s or 60s in some cases), there are so many changes I'd have made in my life... NOT running cross-country track in high school, as an example. Pushing harder for definitive reasons for things. Knowing to MENTION problems that seem far away from the "right then issue". And I'm a retired nurse...
Interesting to hear your story. I have some of the same problems. Stretch marks, flexible skin, hypermobilyty, Sevier stress problems, hart rate spikes, digestion problems (and gas in stomach with a lot of pressure), tall skinny fingers, dislocations, migraine, titinus whe muscles are tight and much more. It's hard to live with this and I've gone through many doctors, fysio, massages, gyropractors, oshtheopaths and more. Just last week I found out what condition I really have and it's eye opening. Now doing plates instead of yoga. Do you have any tips for me, I made it worse the last few years by overstretching with yoga and overtraining with sports and also very energized because I'm always alert (primal attack state) so I overuse my body and mind. Do you have any tips to release pain, stress, soreness and tightness of other help? I am 21 years old so mabye it's not as bad as I tought because I have a long way ahead of me but I've had my symptoms for as long as I can remember. Thank you very much and the best wishes!
@@thimovandespreng2553 check out Dan pain free you ime 42 just getting diagnosed after getting more pain mother has severe ms hypomobilty father hypomobility had CFS so genetic but we have larger fight flight response in brain for pain and sycosomatic symptoms check out j eccles
It's amazing to read what you have to say about your shoulder. You see, I walked into The corner of a wall two and a half years ago and I couldn't move my arm for a week. When I could move my arm I found I couldn't lift anything with that arm not even a cup of tea. I had gotten x-rays, but Because I Could Move My Arm, I did not get an MRI. 6 months later I still can't pick up my teacup so I get another x-ray still not broken, I can still move my arm so I must be fine. This went on until 2023 when I had had enough. After this x-ray I said I would like an MRI. When the MRI came back turned out I had fully torn my supraspinatus muscle and done awful things to the rest of the muscles, my biceps tendon head fully torn away from my shoulder and I had a Popeye muscle right around my elbow.
I did research on that and figured I was going to get a rotator cuff surgery, but turns out in the 2 years that I tried to get a diagnosis and my muscles had atrophied down my arm and I couldn't get a rotator cuff surgery. What I got instead was a Total Reverse Shoulder Replacement.
Age 68.9 for me.😢
This is perfect I can spam this to my friends and family so they can understand
EDS hypermobile matches my symptoms and physiology but I have never been diagnosed. I have no idea how to even bring this up with a medical professional. I am 38 and most of my life doctors only wanna test you if you have severe crippling symptoms. So I have just lived with the discomforts. I’m not saying I have it, of course, but I am interested in at least getting evaluated for it. But I have no insurance and I live in Puerto Rico, so I am at a loss about what to do. I am grateful I have found a lot of relief and support in dance and yoga. Bellydance in particular is great for many of the symptoms. I have focused on strengthening the muscles around my joints and developing greater knowledge of anatomy.
Dont worry I got diagnosed from a genetics specialist and it changed nothing. . . Actually doctors help me less now because they dont know about it.
Getting diagnosed with hEDS was the best thing that ever happened to me. It was a unifying diagnosis which tied all of my health issues together, which allowed my doctors to understand my overall health conditions much better. My primary care doctor was able to send me to the proper specialists to address each aspect of my EDS issues, and working together as a team my overall healthcare and well-being was greatly improved.
Here are the hEDS diagnostic criteria:
www.ehlers-danlos.com/heds-diagnostic-checklist/
Here are articles about the various health issues that EDS can cause, and how they can be treated:
www.ehlers-danlos.com/2017-eds-classification-non-experts/
You need to find a genetic Specialist or rheumatologist to get properly diagnose, even if you don't fall into the EDS category you might still have hypermobile joints or another type of connective tissue disorder, syndrome like fibromyalgia or arthritic condition, most people don't realize there's hundreds!😱🦓 But please get in to a doctor that will listen to you. I can tell you EDS is incredibly painful and from the 100s of people I have talked to within that community no one after 25yrs old ( probably relating to lowering of human growth hormone factor) can live normally without pain intervention medically and over time it becomes Intractable pain that is further debilitating. Please get checked out, don't be afraid and if you feel a medical professional is not listening or marginalizing your serious symptoms or trying to blame it on things like 'stress' or overworking find another doctor. Sadly where the disorder are rare many doctors are not trained to look for them. Best of luck:)
I'm 24 years old and it feels like I'm already 80 years old because of this horrid pain. So I feel some of your pain my friend.
Thank you for making this video! It explains everything so well! I got a lot of information and things make a lot more since now. Thank you
Thank you for producing such an excellent video.
I love that Simon’s cat made an appearance...great video...thank you
Most people won't notice it... Thanks for your comment! ☺️
@@nataliae6623 I noticed it too :) thank you for this video, It's a great alternative to explaining everything yourself over and over to different people, when instead you can just send them this
Thank you so much for making this amazing video. It was the most helpful video I've ever watched about EDS. Great work!
Thanks for this video and clear info. I am 47, have had 4 atraumatic shoulder dislocations, am hypermobile, have scoliosis, stretchy skin, chronic neck pain, insanely long arms, hypotonia, digestive issues (etc. etc.) but none of the myriad doctors, PTs, naturopaths, acupuncturists have ever mentioned EDS. I hadn't heard of it until 2 weeks ago when I reached out to a PT for help managing pain, and after hearing my list of complaints (on the phone, without having seen me), she asked me if I'd heard of EDS. 2 weeks and a ton of research later, I've self-diagnosed that I have hEDS, and have a call with a geneticist in 2 months. Kind of wish i'd known this 20 years ago, but happy to be discovering what I have now
Interesting to hear your story. I have some of yhe same problems. Stretch marks, flexible skin, hypermobilyty, Sevier stress problems, hart rate spikes, digestion problems (and gas in stomach with a lot of pressure), tall skinny fingers, dislocations, migraine, titinus whe muscles are tight and more. It's hard to live with this and I've gone through many doctors, fysio, massages, gyropractors, oshtheopaths and more. Just last week I found out what condition I really have and it's eye opening. Now doing pilatis instead of yoga. I know you reacted a year ago but I have the question what you've learn and if you have any tips?
@@thimovandespreng2553why Pilates instead of yoga??
This video is one of the best I've seen , it covers the very basics in general.
Thank you so much for this! I send it to people who want to understand what I have and what it means. It is the best tool out there.
Love this vid. Before I was diagnosed, I relied on videos like this to decide if j should pursue diagnosis. In an oft-misunderstood disorder, accurate info is key 🥰
Hello, Natalia! My name is Manuela and I'm a zebra from Brazil. I recently wrote my master's degree thesis and as I mentioned the Ehlers-Danlos Syndrome in it, I was searching for vídeos/animations to include in my presentation. Your's is perfect, but the translation to Portuguese was really necessary so I made the subtitles to the video! We really need materials in Portuguese about the syndrome because there' s hudge lack of them around here!! Congrats to all of you for this beautiful job!
Best introduction to this subject I’ve seen to date... thank you!🙏🏻🙏🏻😎👊🏻👊🏻
Thank you for this informative and helpful video!
Kusunoki Tomori (VA of Setsuna Yuki from Love Live Nijigasaki) has recently been diagnosed with this disease.
I have Hypermobile EDS and the first in my family. Whenever i try and explain to people what it is they don't understand and I've been bullied before. People always think I just use it as an excuse such as to not do P.E, which I don't. I would much rather do P.E then have EDS. I can crack my body parts and roll my shoulders back and make click noises. Everyone calls it weird and tells me to stop, although I can't choose to do it or not, it just feels as that'd what I need to do. It doesn't hurt if I don't but I get a funny feeling. I've been diagnosed by doctors when I was 8years old. I had no idea what it was really, as I was young, as I got older I found out about it and how serious it can be.
Great video. My son has this type of EDS, POTS and Mast Cell Activation Syndrome. He has tried swimming on and off but he has subluxations and dislocations from the resistance of the water. 🤦🏻♀️
I have Heds. since i was 4 i have been dealing with knee cap dislocations. over time my eds got worse i had many knee cap dislocations sevral torn liguments and much more before i got knee surgery. i was diagnosed with eds when i was 8 but i didnt have knee surgery till i was twelve i ended up having it because my knee caps were dislocating almost everyday and i had torn my mpfl sevral times. i had an mpfl reconstruction, and now i am recovering from my second. im an so lucky i was able to be diagnosed early and i was able to be sort of normal though there are still the other troubles of eds to deal with i hope everyone with eds can manage to find a happy place.
Jalyn Ann May God Bless You With His Full Armour and Divine Love From His Son
I try to explain my medical stuff to family but I think this will help....thanks.
so well done thanks I have this too.
I have it from my mum and my mum has it from her mum 😂
I was just recently told the term for it and all the symptoms were mind blowing... for so many years I got crazy tests trying to figure out what’s wrong with me, I have no idea it was all connected to the hypermobility
your children have a 50/50 chance of getting it.
Wow there’s symptoms I didn’t know were caused bc Ed’s that I had. Like the acid reflux stuff and anxiety and fristration
This is the best video I have seen on HEDS! Now I can send it to my family and help them understand what's wrong with me! Do I go to my Rheumatologist to get splints and a handicap sign for my vehicle?
I have it and I was the first person in the world to be diagnosed at age 11 I have long toes
Can you enable the subtitles creator? I'd like to share this video with my family and friends, but they don't speak english... I'd like to translate it to portuguese
Sure! I will do it as soon as possible! Thank you very much :)
That's Simon's Cat in the last slide.
Well I’m convinced I have this. My hips dislocate when I have sex and when I get my son in his car seat, or getting in the car. I have mild POTS, I always thought it was Orthostatic Hypotension, my ribs had subluxation with my pregnancies (literally UNBEARABLE pain!) my fingers and shoulders and toes are extremely “double jointed “ and I have IBS. My skin is soft and pliable. I’m going to get a real diagnosis but this just explains everything that I’ve experienced my life. SMH. Wow. 🙏🏻🙏🏻
Dark Skies sounds like they sublux where it pips half way out but remains in socket so you can move it, if it pops right out it's useless and you can't move it or walk on it, most of us get sublux till the connective tissues can't take it anymore and start to allow the whole joint to dislocate
Take the beighton scale test for hyper mobility, it's a good starter and if you score high ask doc to order a genetic test
Much Love and God Bless
I can guarantee you do have it... it sounds very familiar LOL😉😂🦓🦓 Please get in to a genetic specialist for test and with a good rheumatologist, it can be dangerous not having a diagnosis especially in emergency events or proper pain care with EDS. My liver has spontaneously had bleeds, which is a danger to all hollow organs in a EDS and other complications but if you're not diagnosed it could prevent proper identification of something that could be deadly. Best of luck :) 🦓
@@LDuke-pc7kq update I did get a diagnosis. I have it. I suspect my mom does too and she thinks her mother had it as well. Im just grateful to learn because everything was always compartmenatized and it’s all related.
Will crispr do any good to eds patients?
Crazy how many conditions are comorbid with the original genetic condition.
Is there a correlation between ITP and EDS??
I wish you’d spend more time explaining the 2017 criteria instead of taking parts of it, or some not on it giving more explanation there.
Is pectum excavatum present in eds people. Please someone tell me about this
The Medical University of South Carolina, USA, researchers announce gene mutation discovery associated with hEDS!
What Is it ?? Thank you !
Is it true, that a spine deformation can be a symptom as well?
Scoliosis,yes
Yes, scoliosis
I had major surgery on both of my shoulders for easily dislocating.
are u sure it is not fsh MD ?
Is it possible to have hypermobile EDS without having hypermobile joints and only having issues with joints and internal organs (prolapses etc) ?
There are 13 types.
I got diagnosed with hEDS by an expert in the field. She unfortunately is just a scientist and can't technically diagnose me formally. She did write it in my journal so that my GP can give me the formal diagnosis. My GP doesn't believe in the diagnosis. She (GP) just thinks that all my issues are due to my depression. Depression doesn't cause severe joint pain, twisted ankles on a regular, regular diarrhoea, heartburn and a lot more symptoms. I also have endometriosis which exasperates my hip and lower back pain. I also have ME/CFS which adds to everything but my GP doesn't count that as a real illness either.
I recommend you find a new doctor who will listen to your concerns and treat you appropriately. Good luck.
I saw Simon's Cat!
If I only experience mild symptoms is it the chance of my offsprings having similar symptoms higher? If they have HEDS also
My symptoms are worse than my mother's, her's are better than her mother's symptoms were, one of sons has symptoms worse than mine, my other sons have milder symptoms than I do. It is very variable.
Dextrose prolotherapy can stabilize the joints.
Not sure what makes you think polo therapy can stabilize the joints.
Rejuvenative injections will still regrow faulty ligaments and tendons. Only thing is with them being new cells, they won’t be overstretched.
@@kathydobbs9850 I have had them done on my S.I joint, the sugar water irritates the ligament and stiffens it, my S.I joint no longer clicks when doing abdominal exercises.
@@rayankhan743 I have had them done repeatedly over the past five years to many areas including my SIJ. They regrow new tissues(ligaments and tendons). They don’t always stabilize the joint since there can be variable results and may be a. while to reap the full benefits. I’ve also had PRP which is stronger than prolotherapy. It’s important to have proper physeal in conjunction.
Glad things worked out so well with yours. My beneficial results did not last long unfortunately to my sij.
@@kathydobbs9850 I am sorry to hear that, we done a combination of PRP and prolotherapy, it helped my S.I joint.
Quiero traducirlo 😭 no entiendo!!
Hay una versión en castellano, si visitas el canal lo encontrarás!