I don’t know how many times I’ve tried to explain: I don’t have hyper mobility because I was a dancer, I was a dancer because I had hyper mobility! I got so much attention for my “flexibility.”
im also hypermobile but i am not flexible in my splits, not naturally. As a dancer I was very flexible in my back/spine, and in my ankles and feet. As well as my hands and shoulders and my pelvis/hips. I cant do the splits easily but I was always able to pull my leg up way farther then it should and only now i realize I was pulling it out of alignment and now i deal with my hip not staying in place constantly and it causes me so much pain.... i was always confused when i pulled a heel stretch and people would say "omg you are so flexible!" when in reality i was far from flexible in my splits and stuff. I was always super flexible in my back tho. And now everything that was unusually flexible in cheer and dance are now a daily nuiscance and make life miserable.
Conversely, my hypermobility has stopped me from dancing. I like belly dancing and breakdancing, and I struggle to get precise movements because everything is so flip floppity.
Thank you. I was taught that I was just a whiny kid and told “you shouldn’t have that kind of pain, you’re too young. “ And they’d leave it at that. Now I’m in my mid 30s and all my joints just kill me now.
They are abeilst, they said the same thing to me, but I know how to hiss, who are they to claim superiority over another just becuase of age? They are just jelous that you are going to have what you need, unlike them, what they want.
Try eating more saturated fat from grass fed lamb + beef. I have hEDS and that is what is keeping my joints good even though they are very hypermobile. If I dont eat it every day they start to get achy / painful. But I am on a ketovore diet. I avoid most foods as they affect my joints. A lot of it is diet related or that is my experience.
Same here! My mom had to take me to the Hospital so many times apparently because she said I’d be screaming in pain and I’d be saying that my knees hurt. They’d be red and swollen but she said by the time we got to hospital and had a doctor see me, I’d be fine and running around laughing and playing. Now I know that it was likely related to my JHS and my knees are my biggest source of pain due to hyper extension
Same, my knees don't but they used to when I was young. My hips are the most obvious together with my hands and wrists, and those are the joints I've had issues with.
Fr. I shouldn’t be able to slip into the splits with 0 pain despite never stretching. It’s not like I’m a trained dancer or gymnast for example. Edit: and despite that I get a lot of hip pain and stiffness? It’s so odd
Can't edit, so - HSD is what he is talking about. It's not benign, but it's not hEDS, either. So they called it Hypermobility Disorder. Was the term out when this video was made?
I had so much pain - the doctor diagnosed me with rheumatoid arthritis even though all tests were negative. Got prescribed immunity suppressants , steroids , heart medication. I was just about to pop the pill until a gut feeling stopped me . Turns out I had hypermobility syndrome which got activated because I started running . Yay
Regarding the Mayo clinic handout, they even found a correlation with high academic achievers?? Holy cow, I'm so glad that the science is finally starting to coalesce around what we see described in the community.
This was well done. I appreciated that he is more focused on improving quality of life for symptomatic patients than naming and classification based on arbitrary made up scales.
Yes! The whole functionality thing is the most important thing to me! I'm 70, still very hypermobile, and movement and pain management is the key for my EDS pain control!
I have very severe hypermobile Ehlers-Danlos syndrome and wasn't diagnosed until 2018, when I was 36. I had to figure it out on my own and then find a geneticist to confirm. I have had dozens of surgeries, but to name a few: scoliosis fusion and rework with extended fusion t3 - l3, 17 surgeries on my right foot ankle and calf, 12 surgeries on my left foot, right hip surgery as my glute tendon completely tore off my femur, SI joint fusion, currently have pelvic prolapse of my colon and my bladder but trying to hold out on surgery for as long as I can, Left knee scope for torn meniscus, My left thyroid removed, my appendix removed, lymph nodes removed in my throat when I was a toddler, two c-sections, and the list can go on. Surgeries I currently need: I have four tears in my right shoulder and three in my left shoulder. I have severe TMJ that needs surgery. Because of the TMJ, I am going to need probably all new teeth by the time I'm 50, currently I'm 41. All of my teeth are broken and have chips and cracks all the way to the root. I can't wear anything to protect my teeth, because when I take it off in the morning my jaws dislocate and it's very painful. I have three tears in my left hip and one tear in my right hip again. I can only sleep on my back, no longer on my sides or my stomach. I have three severely bulging discs and arthritis in my neck. I've got severe arthritis at the bottom of my spine as well, well all throughout my spine. The cartilage in my nose has torn and it is about to break through the skin, so I'm currently searching for a nose surgeon who knows how to fix it, so that I don't have to pay for a nose job with a plastic surgeon. I've gone to four doctors and all of them have told me no. I have tears in the tendons in the back of my knees. I have carpal tunnel syndrome in both of my wrists and my fingers fall asleep or hurt, just depends on the day. I cannot write unless it's a short note. I'm trying to do everything I can to stay out of a wheelchair. I currently have two children ages 9 and 11. And thank God I have a wonderful husband who is my soulmate! I also have a ton of other health issues, a broken xiphoid process, extreme pain in my ribs, moderate POTS, ulcerative colitis, hiatal hernia with GERD, mild to moderate gastroparesis, motion sickness, constant heartbeat noise in my right ear, migraines, CONSTANT PAIN ALL OVER MY BODY ESPECIALLY MY LEGS AND SPINE, depression, rosacea, the list goes on and on again. I'm excited to see that more and more people are getting educated on Ehlers-Danlos Syndrome. Many doctors just think it's a mild condition where you may dislocate a joint or have subluxation, but it's a beast of a disease. Thank you for educating people and for this video! ❤❤❤🦓🦓🦓❤️❤️❤️🦓🦓🦓
@@patientzero5685 My health exploded in 2014. Before that, I wasn't on medications, had only had a couple surgeries, and worked full time, running a bank. I knew I had scoliosis, but no other health problems that I was aware of. I had my kids in 2012 & 2013. In 2014, my husband, who was an officer in the Navy Reserve, was called to active duty for 14 months. I had a 2 month old and a 20 month old. My mother was having an affair and my parents were going through a divorce. My only sibling, my sister, was at the peak of her alcohol addiction, and we didn't live close to any other family. My friends all worked and had their own kids they were raising. The only help I ever got was some people at church would bring me meals. Half way through, I tore my meniscus in my left knee and had to have surgery. Plus, I had terrible anxiety. I was on crutches with 2 babies and no help and had been dealing with anxiety. Being alone and dealing with anxiety brought back trauma from my childhood. My mother is a Narcissist, my father is an enabler, and I was the family scapegoat. I turned to the streets for love and went through sexual trauma repeatedly. At home I went through physical and mental abuse. I think in 2014 my body just broke after having been through so much in my life. After the knee surgery, I started getting sick. It started with fibromyalgia pain. Then I started having POTS issues and IBS. Things just started just spiral very quickly!!! However, I didn't have my kids until I was 31 and 32. All my life, my deepest desire was to be in a secure marriage and to be a mother. I don't regret it one bit, because my daughters constantly give my the will to keep fighting through more surgeries and more pain. Anytime I start to get melancholy and feel like giving up, I think of my husband and my kids. I'm thankful I didn't know before I had kids, because I probably wouldn't have had them, because I wouldn't want to risk them having EDS. However, I'm grateful to say that neither of them have EDS. They have a few characteristics, but not nearly enough to be diagnosed with EDS. They are strong and they are athletes. I pray to God all the time that EDS stopped with me, in my bloodline. God has always given me the deepest desires of my heart and I am completely faithful that my grandkids won't have EDS. I won't have 100% certainty until I actually have them, but I just have peace about it. I can't explain it. There have only been a very few things in my life that I have felt peace about like this, but I have that peace. God is good! I trust Him.
@@patientzero5685 But thank you for asking! I like to share story, so I can raise awareness and so I can also give God all the glory for bringing me, and continuing to bring me, through the fire.🙌🏼
I cannot tell you how this video changed my life. I have always been "double-jointed" in all my joints. I did "tricks" for friends as a kid like they describe here. I beat the sit and reach records in school, and was a gymnast. I eventually ended up dislocating shoulder as a kid many times, and knee and thumb as an adult. I have flat feet. I had a hernia at age 6. I am tired all the time. I have depression and anxiety. I am 43 years old (still as bendy as I was a kid). No Doctor I have ever seen for any of the dislocations, hernia, depression, etc. has ever mentioned that they might be related. I don't think there is anything I need to do as far as treatment? I work in a very physical job, which I think helps, since the muscle somewhat keeps the "blown out" joints in place. For my whole life, the pain and injuries have been dismissed as me being dramatic. I am not sure how to process this , or where to go from here, but I feel a lot about this.
For 5 years, i was facing depression, anxiety, chronic LBP, until one day a spine specialist diagnosed my symptoms as JHS, and your 50 minutes video is the answer i've been looking for all of these years. So... thankyou, thankyou, thankyouu !!!
For just hypermobility (especially if there aren't significant problems with dislocations etc, just flat foot or abnormal gait / posture), not looking at EDS might be fine, especially if they're older and have had plenty of time to see co-morbidities come up, but if there's POTS, fatigue, pain, GI symptoms, anything like that, not looking at or considering EDS is horrendous practise. CTD's causing blood vessel laxity is not just increased, it's almost absolute, especially or mostly for those that qualify for hEDS/EDS. Yes nervous system problems might be a contribution factor and might be a large one for some, but those that have many of the following: POTS, GI, MCAS, pain, muscle tensity, various malabsorptions, hyper-adrenergicism, hypovolemic form, etc. alongside what is clearly a CTD, should be considered for what it likely is; a distinct CTD, currently called hEDS. Also the label HSD (Hypermobile Spectrum Disorder) is another (although maybe a partly controversial label), and that accounts for a gap (between hEDS and general hypermobility) where many of the above mentioned symptoms are experienced, but with less thoroughness across the mentioned pathologies in presence of them. Also yes it's the responsibility of a doctor to connect the dots, but most are too ignorant and arrogant to recognise when they cannot and to look at say EDS.
I have hypermobility and I used to be a gymnast, wannabe contortionist, cheerleader and power tumbler. I now have psoriatic arthritis which has injured my spine, shoulders, and MTP joints, and that impacts some of these exams. Knees and elbows still crazy hypermobile. I’m over 40.
wish more doctors would keep some of these points in mind, especially the fact that it's not a fully understood thing. i can't get any sort of help with my chronic pain because i'm "just" hypermobile and that shouldn't be such a big problem if i don't have classical eds or marfan's according to the few doctors i've managed to see. being in ireland doesn't help because we really have no specialists for hsd/eds and associated conditions in the country, and our health service as a whole isn't really functional. but even with that in mind just having doctors know as much as is in the video would be a game changer :(
Ime same UK though j Eccles has found we have larger amagdalia so this is why we feel more pain mines in trigger points and flat fleet are you taking plenty minerals strength train as able do hard trigger points are meant to be sycosomatic any ocd
Same in Australia. Feel like we're 60 years behind US. My best physio was a rehab physio and best GP was younger one with interest in sports medicine. Also one ER doc knew about EDS and dysautonomia, but was screened for heart attack first!
@@TheMazinoz I mentioned dysautonomia to a doctor, after I was extremely sick for two months, and the response was "what's that?" I'm in Australia, too. My physio is treating me for hypermobility, using clinical Pilates. But, I would like a formal diagnosis.
@@annesilver8387 H Levy article in Gene Review on Hypermobility - show it to said doctors. Very detailed. Honestly I know one GP at Griffith University teaching students still holds outdated views from the 1960s on it. That is what you are up against. CBD oil helped me a lot if you can get it somewhere, internet etc. Wish they'd make it cheaper and easier to get. Also try arthritis relief measures - creams, Epsom salt baths, mg supplements, heat, etc
Yes it's quite ridiculous that patients here in Ireland have to travel abroad for assessment and treatment for eds. Most of these medics who tell a person to do physio and take ibuprofen have never experienced chronic pain, they have no idea about the different layers of pain a person can experience. Someone on Joe Duffy's show recently mentioned a rheumatologist in private practice in Cork who has experience of hds/eds but unfortunately the guy couldn't remember the name!!
My mom took me to a doctor at age 11. Knee dislocations, inability to get up off the floor unless I pushed myself up onto my hands and knees first. Fell down stairs a lot. Ballet classes. Posture lessons. The doc said if it got worse, I had muscular dystrophy, if it didn't, it was all in my head. I made sure it didn't get worse. I am now 76. I can still touch the floor with straight legs. I still have the pain.
Doctors need to know more about EDS. My daughter in law gave up on doctors. Even her water therapywas discontinued by her therapist because it was doing so much damage. Because she gave up she didn't see a doctor for neurological symptoms. The coroner said she died from undiasongesed and untreared epilepsy disorder on July 15. She was diagnosed with EDS by Dr. Tinkle at CCMC. She never could find a doctor to help her. Her 13 year old son, my grandson, shows numerous signs of EDS. He also has severe autism and is non-verbal. I doubt he will get any treatment. He also has severe seizures and frequently ends up at CCMC. If he dies so will my son. Doctors have to understand EDS better. If I sound angry it's because I am. She couldn't fin
I’m sorry for your loss. I wish I had an answer. I learned that doctors dismiss you quickly if they detect any hint of desperation from you. You also can’t be angry, complacent, ignorant, knowledgeable, nor can you have a long list of issues or a family history. You can’t sound like you have any distrust for doctors- and you don’t know anyone who does. Treat the doctor like a god and tell them that you have faith in them to help you get to the bottom of the diagnosis AND you know that they will set you up with rehab and any specialists.
Doctors are not Gods there’s only one God the one ☝️ he’s in Heaven lives in our heart “ he gives us enough sense to know our bodies, can a doctor go inside of you and know your pain ? You seemed to have a lot of ignorance yourself!!!!! 🙏🇺🇸
I'm 71 and on a waitlist for genetic testing, but at this point it's nice to know my pain and chronic fatigue is not "in my head" as so many old school doctors told me.
Medicine nowadays does a good job of treating what will quickly kill you but are dismal in treating conditions won’t kill you but will make your life miserable. In my older age, I believe the future of medicine should be focused on early identification and early intervention. That in my opinion is the best way to cut down health care costs. Kudos for medical treatment focused at improving patient function, rather than trying to decrease the rating on a 1 to 10 pain scale. Concerning early detection and early intervention, I believe that there is a significant percentage of people with hyper mobility issues who then go on to develop chronic pain, decreased functionality & quality of life and in worst case scenario , fall victim to the opiate crisis. What if there was a way to identify these patients and then treat their hyper mobility with strengthening the weaker muscles that make it easier to be hyper mobile? There could be the chance to be proactive- do preventative work to cut down chances of chronic pain, injuries and have better enjoyment of life. It seems with hyper mobility, looser connective tissue is part of the problem; however, I think the other part of the hyper mobility is that there is one set of muscles around the joint that overstretch to be hyper mobile and maybe get more weak. Perhaps these stretched out, weaker muscles need to be strengthened to increase joint stability. I instinctively think that a balanced strength of all the muscles around the hyper mobile joint will improve the biomechanics and movement of the joint. Hopefully, the improved motion of the joint will result in less injury and pain. For the kids who have hyper mobility but don’t have EDS, I think the hyper mobility causes posture changes & mechanical stresses which the body compensates for with altered body positioning and altered biomechanics. The end result is more injuries to the hyper mobile joint and the joint above and below the hyper mobile joint. What if those kids could get identified early and be trained in body position awareness and also better biomechanical ways to move and cut down on future pain? Already in Texas, school kids are screened for things like vision problems and scoliosis in elementary school and appropriate students are referred to see physicians for further evaluation and treatment. I wonder if in the future, coming up with a well designed assessment scoring for hyper mobility, figuring out if there are any hyper mobile joints that with appropriate physical therapist assessment & intervention with appropriate strength training could decrease “growing pains”, injuries in later life and in extreme cases, not be a victim of the opiate crisis. In this area of hyper mobility & chronic pain, I am surprised that there is not a standardized way of describing the hyper mobility. I am disappointed at the lack of equal peer acknowledgement of physicians for the skills and clinical issues of well trained holistically oriented physical therapists. I believe that a strict standardized way of assessing joint mobility (ideally developed with significant input by physical therapists) is important to better understand this hyper mobility issues. Additionally, a standardized hyper mobility scoring assessments must include scoring for the big, more load bearing proximal joints (shoulders & hips), what I call the “middle joints“ (knees & elbows) and working further distal to ankles & knees and finally, the toes & feet and fingers and hands. This way, clinicians can better understand which population of non-EDS hyper mobile patients would benefit from earlier identification and intervention. My intuition tells me that problems with the feet and ankles and with the hips are more likely going to be related to maladaptive, inefficient movement that cause more pain, producing joint issues in later life. After all, it is the feet, ankles and hips that bear the weight of the entire body. But the development of a standardized mobility scoring scale would be a good start in better understanding the whole consequences of non EDS hyper mobility. I am non EDS hyper mobile such that I n college days, I had good flexibility in dance class, could do splits on both right & left legs and then lie my body completely flat against the front leg with my forehead on my knee kind of stuff, as well as have flexible feet who probably developed poor biomechanics that really put undue stress on the lumbar spine which likely contributed to more than one round of lumbar spine steroid injections and is post lumbar laminotomy and foraminotomy.
Regarding physical therapy, physiotherapists would tell me that I'm too flexible but gave me standard exercises without any adaptations, it would solve a problem one place but create another somewhere else. I've been trying weightlifting exercises again and again but always ended up with terrible pains which were not muscle-related. Now when I see the slide about exercise therapy I understand why! Thank you for sharing this presentation, I understand now that it is crucial for me to look for help and exercises that are specific for joint hypermobility.
I have very severe hEDS. I've had over 30 major surgeries on my joint and spine, especially my feet/ankles where I have all artificial tendons and ligaments. I will tell you the best exercise for me has been to walk, ride my stationary bike, and do simple strengthening exercises without weights. It's about movement and consistency without strain and without much stretching. Stretching can be dangerous, because overextending is easy to do and stretches out tendons and ligaments which leads to tears or breaking. Once I tore my glute completely off my femur doing a simple stretch. Plus, never stretch before warming up a bit. Just what I've learned over my 43 years.
Thanks for explaining why my writing is ugly and painful! I was told by a teacher's aid in elementary that I held a pencil weirdly, but didn't think much of it. I totally agree with it being normalized in families. My dad and I can both pop our hips out (which I recently learned from a doctor is called a subluxation and he was shocked that I could do it on demand), and with relatives with elbows that bend even farther back than mine, I didn't think it was worth mentioning. I have a 4 on Beighton score, but my feet are hypermobile, and I've been going to physio/manual therapy to get subluxations and stuck joints treated for over a year while waiting for a connective tissue specialist. I'm pretty sure there's something going on, my family also has gluten intolerance, POTS, allergies, dental and eye issues, as well as having long arms, so I'm thinking it's hEDS, which 3 physiotherapists also suggested, but physio doesn't look at skin and scars, so that's why I'm waiting.
I have EDS and had to have three surgeries to repair ligament tears all over the pelvis and pelvic organs due to an uncomplicated childbirth, which is how I first was diagnosed with EDS 12 years ago (I had no clue before). I also have interstitial cystitis which developed a few years ago, and I from what I understand IC and RA (rheumatoid arthritis) are both far more common in EDS patients/families than the general public. I have grandparents on both sides of my family that had RA. Since IC has to do with mast cell activation often (which is a problem with EDS causing POTS), this makes sense. I also have a brother that had an inguinal hernia at a young age, and my brother and Dad both have hiatal hernias. My brother and I both have what is called the "marfanoid habitus" which means having long, skinny arms with tiny wrists and long, skinny fingers (called arachnodactly). I have POTS as well as migraines too, and my blood pressure tends to run low while my heart rate is always elevated (to compensate for vasodilation of EDS). Also have digestive issues with my lower gut with IBS varying between slow then fast motility that cannot be connected to anything in particular.
@@jercasgav I didn't know it could cause such issues, although I'm on the wait list to get an MRI with dye to see if I have any damage to my hips from frequent subluxations as a kid and teen. Not looking forward to the dye because I'm very sensitive to a lot of things, and seem to have allergies to just about anything (recently discovered apples, peaches, and things in that category bother me, but more common it's synthetic materials like strong adhesives, added fragrance, and some cleaning products). I was told for years it was just growing pains and low blood pressure, so I'm glad to have a few answers now. Have you ever tried any compression garments like socks? I find them to be great, both for helping with POTS, and with ankle and foot stability. I've heard that compression shorts can help too, or the full tights, but I'm allergic to the tights (at least the ones my local pharmacy has), and I haven't found shorts that fit right, so I stick with socks, and gloves as needed for wrist support.
@@joylox the die generally makes me feel unwell unless I drink water and electrolytes like a fish and pee like a racehorse lol. Having said that it also makes me itch so whenever I absolutely have to have it I will take kidney support herbal remedy, and also Benadryl. Contrast dye is not recommended for people with history of kidney disease or anybody with a GFR lower than 90 so please inquire about that and have them do a blood test for the GFR number before you agree to the contrast dye
What an incredible presentation, I learnt a lot and it was extremely validating! I'm also very interested in the relationship between hypermobility/connective tissue disorders and endometriosis. I didn't see anything about this relationship here, but wondering if anyone knows anything about this relationship/ other resources which discuss this. Thanks!
Im 40 and my Beighton score is 9/9 still(i dont train to keep felxibility) I am just finding out about these conditions and that this is probably what i have had all my life. I did ballet, tap, jazz for 5 years from 10-14. Multiple sprains when i was young, elbow dislocated as a baby, broken wrist at 12, etc. Lots of other indicators but yea this is so crazy to learn about at my age. Thank you for the video. Very informative.
Very interesting. I'm 67 with hypermobility and fibromyalgia, 3 of my children are the same. I've been sea swimming almost every day. Supported exercise (on water) is marvelous and pain management is significantly improved, especially in winter at very low temperatures, however, the clumsiness on land, brain fog, disorganisation and forgetfulness are embarrassing.
@tomsale5142 I don't know but I think I have ADD, and though pretty much calmed down after journal therapy I have CPTSD. My concentration is dreadful. I'm a grasshopper, my mind jumps from one subject/task to another. I am very artistic and my poetry is published FREQUENTLY and I think grasshopper mind might be part of the artistic temprement. It's how we can make leaps of the imagination and create new ideas. My pain is in my muscles and joints. Shoulder, hips and spine are bad, an osteopath has had to realign my facet joints many times, although not as often now I'm older. I get terrible cramp in my calves, hamstrings, and back.
Are you taking Gabapentin? If so, please tell your doctor to wean you off of it. It causes 10-20 points of IQ drop, as well as brain fog, dizziness, etc. I refuse to take it and have almost no brain fog anymore.
Oh my, I sure wish this was more out there in the medical community earlier. I am in my mid-60s and didn't get diagnosed until then... It was a fluke that I even heard the name when I found out my dad was not my dad and a new half-sister asked me if I had it. I called my Dr and she got me a Geneticist immediately (the next day) for over an hour by phone as it was during COVID. Also probably have POTS MCAS and Dysautonomia. I was already disabled by then. All the suffering and all the meds and MRI with contrast dyes that ruined my kidneys which are now failing and on dialysis... My mom might have also had this interestingly enough! She knew something was wrong with me and took me to so many Drs. I used to sprain my ankles every weekend while running and playing. Had to buy crutches as it got so expensive to rent them! I blame the Medical Doctors for being taught that when you see Zebras, think horses because it's more probable. Guess what? There are SO MANY MORE OF US THANK THEY THOUGHT!!
Thank you for this! This is something that I asked about a couple of years ago and was largely dismissed for it. But I'm pretty convinced that this is why I am in pain most of the time.
My Neurologist performed the Hospital Del Mar test on me, and I passed enough of it to get my Diagnosis of EDS. He took in Consideration my age and knew that I won’t be as hyper mobile as I was in my childhood and teenage years. The type I was Diagnosed with is the Classical subtype, which affects my skin, and my ligaments more. I am hyper mobile in my hands, my neck( I can turn my head like a owl) and I am hyper mobile in my waist area and some in my left elbow but not too much in my right elbow ( my dominant arm). I am also hyper mobile in my knees. My mom and other family members have Osteogenesis which shares the same genetic mutation with Classical EDS.
Do you know more about the same genes you speak of? Can the same thing differentiate into either and is just "luck" for lack of words? Or the family won genetic lottery? I have hEDS and curious..hope im not brain fogging. Cheers
@@dana102083 The gene that causes my type of EDS is the same one that causes Osteogenesis, which is what my mom and other people in my family have. I have EDS- Classical type. The COL5A2 is the genetic mutation.
#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!
@@shannongreenwell1278 gene expression happens because of the lack of proper human nutrition. Humans don't have mutated genes or damaged genes. #DrThomasSeyfried and several other experts now know that it's our nutrition...
@@dana102083 I read books on it and it is the COL5A2 gene that is responsible for the type of EDS that I have. I don’t think of it as a “ 🍀 of the gene lottery “. I wish I didn’t have it nor did my family have Osteogenesis Imperfecta.
Thank you ! I'm showing this to my doctor. I recognize everything! But my doctors can't find the problem ... My hopes are up again. Greetings from Belgium!
I don’t like how he says he mostly diagnoses adults Hypermobile Syndrome. If they have HEDS they should be diagnosed with why they are. Not just to make it less confusing.
@@Luna_Loves_TheMoon I completely understand that now I that I know more about the conditions. I’m actually only diagnosed with Hyper mobile syndrome and thought that I would for sure be hEDS so this helps me feel more validated. Thanks for bringing this up and I rewatched the video and appreciated more now that I been through this journey and learning about them and trying for diagnosis
I’m not sure when I fall on the hypermobility spectrum as I don’t think I fit exactly. But given my mom looks to be classic Marian and my kids are definitely hypermobile in their own ways I believe this may be an answer to my admittedly mild but unusual health history. I have the low blood pressure and high heart rate. Despite being dexterous and an artist I’ve always held a pencil so that I don’t have to use my overflexible most distal finger joints. When I was 12 I injured my SI joint after one track and field practice and I’m still dealing with muscle slings and tension pain issues from that hypermobile joint throughout my body to this day. I’m myopic. I have heartbeat arrhythmias. I shifted one rib posteriorly and it still shifts back. My right clavicle is out of place because my manubrium is too flexible and my first ribs and cervical vertebrae similarly have issues. My jaw was injured during wisdom teeth surgery and that pain took a month to subside to a livable level. My jaw has never been the same. Uncomplicated childbirth destroyed my pelvic floor. I’m not sure exactly what all kinds of prolapse I have. My surgical scars all stretched out. All the postural adaptations listed in this video I have. I suppose our bodies need to feel a certain amount of tension for homeostasis to be achieved and distorting posture can help achieve that when your connective tissue is too flexible. I’m suspicious that a nutritional aspect may be at play, that supplementation may help a dysfunctional system build better tissues. In addition my family history supports the idea that we all have loose connective tissue in our intestines.
Very informative. It seems to connect a lot of dots and explain the health problems I've had since I was little. And why I went on to develop ME/cfs and POTS.
it would also be cool if you did a sub class -talking abt the diff dx of fibromyalgia vs jhs. on reddit a lot of people complain that they were told they had fibromyalgia from their pcps when in actuality they later in life by their pts were dx with jhs-and have thought all along that it was jhs and pcps or old school rheumatologists just do the catch all condition fibromyalgia.
Wow, he has just described my posture in every single detail. I also have hyper mobility in some joints, but not all of them. The problem I am struggling last couple of years is neck shoulder pains. Am I the only one who sleeps ON their shoulders? I mean that I just bend it towards my chest and put my cheek right on it. Waking up in morning is totally not cool! I hope I will get my diagnosis one day:( I am just 29.
Dr. Tinkle - I have been diagnosed with hEDS by 3 different doctors. I must tell you that PAIN and DAMAGE is different between people! It will NEVER be possible to put us in a box since it is a FULL BODY CONDITION. It effects one person one way and another person another way and then someone else another way! When I was young, I had back pain and headaches but mostly functioned just fine. Then I injured myself in my mid 30s and it never healed, leaving me in chronic pain for the rest of my life. I also got Adhesive Arachnoiditis apparently from "treatments" for my pain. Now I have TWO incurable conditions causing pain and difficulties for the rest of my life. If I hadn't injured my back that day, pulling my kids in a wagon up a hill on a hike, would I be in a different position now? YES. I am almost positive that I would probably be having more pain than others, but NOT this 24/7, constant pain where I cannot function. Everyone is different, especially regarding EDS. Please stop trying to put us all in a box, it won't work.
Thank you for this video, it was the missing piece of the puzzle for me. Suddenly my whole life makes sense at 39 years old! I was beginning to think I was just lazy or something. I couldn’t understand why I was so tired and painful.
@@jillianmiller7506yes lost my mum last year to severe ms heds autism I have it my grandfather had it all related to autism fybromyalgia pain worst for me now 44
My partner is getting assessed for EDS and they're thinking hEDS. The weird thing is he was born c-section and still had bilateral congenital hip dislocations.
We prefer zebras, because while we may share symptoms or diagnoses, we may suffer to different degrees. We might not have one symptom but have another, this is why we call each other zebras. Zebras all have different stripes but they are still zebras. While their stripes may be more or less or thin or thick, they are zebras. #teamzebra #teamdazzle 🦓🦓🦓❤️❤️❤️
I hate that scale! Not everyone who is hypermobile is hypermobile in those specific ways! My thumbs bend backwards... but not toward my wrist. They go the other way... doesn't count.
@@LadyPashtaI'm 43 years old and played constant sports. My body was damaged so badly over the years that my joints are breaking down. I was told that because I'm not able to demonstrate it NOW then it doesn't count
Knee pain at 15 told I had loose joints and double jointed....ie hypermobility.Age 19 vestibular migraines. As I got older.........raynauds, osteoarthritis, hiatus hernia, umbilical hernia, ulcers, sjogrens, fibromyalgia.....chronic fatigue, joint and muscle pain.
it would be cool if you did a little sub class of this video to talk abt jhs, relaxin, pgf2a, and menstrual pain- how women during their periods have more period pain due to pgf2alpha, relaxin and how they are more immobile during this time and are prone to more instability and subluxations
I had flat feet as a child (full 9/9 EDS dx at 30) but now have a manifestation of tethered cord (common in EDS) diagnosed at 41, and now I have high arches, kinda crazy. After cervical and lumbar fusions and just 11 years later, I hardly appear hypermobile in those joints that are tested due to arthritis. But they are still problematic and unstable along with common hypermobile joints in spine, hips, knees and shoulders. I guess I call myself lucky that it was caught when it was because I was already on disability when discovered.
The best thing I have found is the low intensity vibration machine … works wonders for my SI joint that is very unstable. Plus added benefit, I feel great and have more energy. Why I didn’t know about this machine before is beyond me. And btw, I am in my mid 60’s
Im really interested in the link between hypermobility and ADHD, fibromyalgia and PCOS. As someone who has all of these, i see a lot of people who share these comorbidities (and usually bariatric patients too). It makes me wonder if dopamine sensors or production (secretion?) is affected by the changes in soft tissues present in EDS or hypermobility.
Excellent presentation! Let's say I suspect I have some hypermobility condition that I want diagnosed. Where would I start? Is there a specific type of dr I should see? My primary care dr refuses to take me seriously. Thank you!
the person stannding in the top right of the sslide in 22:50 is me standing aha and CONSTANTLY being told, stand straight, ur head is too forward, why are u curving your shoulders. Move them back.
I have EDS and I suspect a lot of my dad's side does. I "hang on" my joints and wonder if my grandma did too, as she has had her knees hips and shoulders all replaced.
I cant' do the two hand things, but the others. I'm in my 40s and am now in a stiff and painful stage. Had a dr tell me i can't have hypermobility because I'm short and obese (as if i was born obese).
My GP has been seeing me for hypermobile joint injuries and instability for 4+ years and still won't write down "hypermobile" in my notes. All other healthcare professionals (physio, chiro, RMT, joint specialist) have noted me as hypermobile. I am currently on medical leave from work because I wasn't able to manage my symptoms (yet) and so I'm losing income while my doctor just keeps asking me to lift my arm (range of motion test) and earning his full income. It is so. frustrating.
Regarding change in male:female ratio after puberty - could it be that there is Greater incidence in women related to future child-bearing? A natural process related to hormonal changes n women to support childbirth perhaps? It would be interesting to see Caesarian rates for obstructed pregnancies among the non-Ehlers Danlos hyper mobile.
It is thought hormones play a role and increase ligamentous laxity. Stretchy hips assist childbirth. I was born before the doctor arrived. Mother and me are hypermobile.
I’m worried I have an undiagnosed condition or syndrome having to do with all my ligaments and or tendons. I’ve dislocated my shoulders 11 times. Had surgery on my left 10 years ago and surgery on my right a couple of weeks ago. I have instability on the left side of the jaw and had orthodontic work done as a kid but now need more. I constantly pop my ears throughout the day and have woken up with my jaw dislocated and needed to massage it back into place several times. I have been experiencing ringing in my ears more frequently and loudly lately. All this seemed to get worse after attempting unsuccessfully to scuba dive some years ago. I was going to start on the TMJ path until I dislocated my shoulder again. There is a spot in my spine around my lower middle back that clicks/pops when I straighten my posture and has been getting more and more pronounced/uncomfortable over the years. My knees frequently lock or stiffen up on me and I have to self adjust in different ways to get them to return to functional and I have a strange ability to pop my ankles over and over. I need to get to the root of the problem rather than treat each symptom as they arise. Any thoughts or advice? I’m 34 years old.
You need to get to someone who is versed in hypermobility disorders. Not everyone is. It took 20 years to be diagnosed with hEDS, including many ER visits, lots of GPs (hypermobility is WAYYYY outside their education) and two rheumatologists. Take as many previous records as you can get, ordered by dates, a list of current meds (including OTCs + vitamins,) and any very recent bloodwork you've done (in colour, if it's like Quest or something.) The Ehlers-Danlos Society also has a series of videos on education, things you can do at home, and a guide to finding some doctors. It doesn't cover everyone. hypermobile EDS doesn't have a genetic test but the other kinds do. Hypermobility Spectrum is different, just similar. Good luck.
@@Heffey02 I am so happy for you. Don't be discouraged if the first one says there's nothing really wrong. My first one did and sarcastically suggested a wheelchair... which I'd actually NEED in two years, if any place I've lived in 15 was accessible. :P Come armed with the clinical criteria, a list of comorbidities + side effects from EDS, and if you need to, start investigating THOSE with specialists. I got other stuff diagnosed before the 2nd rheumatologist, which helped with EDS specifically and not just "hypermobile spectrum." If you DO have HSD (hypermobile spectrum) that's probably actually better than EDS, so don't 'hope' for the worst thing. But don't fall apart if you have 'the worst thing,' either.
@@dlm4708 Thanks again. Curious to see what information I start getting as I continue to look for answers. The arm is slowly regaining range of motion. PT, time, and rest seem to be helping so far. Hopefully, the surgery was successful in securing the labrum, and now I can focus on the stabilizer muscles and range of motion. Then it's on to the jaw...
Thanks for sharing about EDS... I've reading about it being more common among neurodivergent, and many have Sensory Processing Disorder and don't feel pain, so maybe that is one reason some say they are asymptomatic? I have high myopia and hugh astigmatism, and I have EDS, not sure what type yet, I still to do genetic test, but for now hEDS....
Has anyone got advice on joint pain management and how to sort out the associated stomach issues. namely pain and diarhrea when eating anything but meat
Heal and then slowly rebuild gut. Can take years and has many factors. Until then.. eat meat.. and eat anti-inflammatory and live anti-inflammatory ... the elemental or gaps diet are fabulous fast approaches
But what if you don't have so much joint pain but the hypermobility might be causing other problems like POTS and muscle spasms. It looks like you wouldn't be able to get an assessment which could be useful in treating other associated problems.
Do you have any wound healing or fragile skin? Bruising easy? Fatigue? Heart issues running in family or yourself? Allergic reactions or sensitivities? They all can occur solo of together. Each type of EDS have varying degrees of joint hypermobility. The hypermobile type is just more common by far. I agree having a diagnosis can help get traction to point to other issues. I have hEDS and even though my doctor knew i was hypermobile, it didn't allow for connection to having a csf leak, even though my symptoms matched. Weirdly as I typed he mentioned headaches but he didn't mention csf leak lol Keep looking for answers. Find a new doctor. Get an online genetic test. Research and joint fb groups. My hypermobility cause way more orthostatic issues at a younger age... Age has definitely decompensated my joints. My limbs get icy cold and super vasodilated. I have pots like episodes but only my BP drops when i stand. I cant tolerate heat and plastic material rashes me easily. I can tell you salt and hydration is the answer. I aim for greater than 5g of sodium a day and another 5g of potassium MINIMUM. I feel like poo if I fall short. I put it in all my water. Movement and to retain mobility is essential. 🙏
I don't have much joint pain and no dislocations though I am very flexible. I have POTS, "migraines", bad scarring, muscle pain in the mornings, numbness and tingling in my hands/feet, IBS, TMJ, feet hurt for my whole life when standing, etc.etc.
I think it's good to orient hypermobile people to careers sustainable for them + tneir employers. (Some joint injuries can be very long-lasting.) There's not much reason why hypermobile folks can't do pretty much any type of public service admin or other jobs with lower physical demand.
Does anyone here with EDS have bone pain, like pain that feels like it goes up the bone shafts? I have had this kind of pain for years now, and not one single doctor will even talk to me about it, or they will assume it is anxiety or joint pain. Yes, I get joint pain, but this particular pain is shooting pain up my bones, like a metal rod is being hammered up my bones, or my limbs are suffocating. I don’t have an EDS diagnosis, but I’m looking into it. I was wondering if EDS would explain it. I have never spoken to anyone who has had this kind of pain, and googling has yielded no results. Thanks
Forty years ago I saw an orthopedist in El Paso Texas. When I told him my very bones hurt. He practically laughed me out of his office telling me bones don’t hurt. One of my many negative dr appointments.
I get this too. At one time I was walking around with my arm held at 90 degrees bent at the elbow almost like pushing a trolley/pushchair. My partner used to compare me to the caretaker out of scary movie. I stopped taking birth control pills and now I rarely get that anymore. If you take birth control maybe try stopping for a month or two and see if it eases for you. Never thought to actually Google it, but from a quick Google search just I came across this. Progestogen-only methods of contraception may not be suitable for people with hypermobility disorders, as the natural hormone progesterone can lead to joint laxity and pain, as well as the risk of injury or dislocation.
I know exactly what you’re talking about. As a kid I described them as growing pains and they kept me awake many nights- I would roll around on the floor and cry. I was like 4 years old. I still get these growing pains but I have a suspicion the pain is the periosteum (Periostitis). Hyperlinks are not permitted but this video shows you (cadaver). ua-cam.com/users/shorts2Bck1iFl3ic?si=GYpPrFSTSxFgWnLw
At 17:00 he talks about hipermobility becoming a liability for ballet dancers as they advance in their ballet training and uses as a source the fact that advanced ballet courses have a fraction of the dancers that started at age 11....I think this is incorrect, hipermobility in ballet is ALWAYS a PLUS, it`s not the reason why dancers drop out of ballet, they drop out most of the time because they are expected to maintain a very slender figure, which is very hard if you don`t have the genetics to be that lean and it`s most of the times the reason why most of those 11 year olds will drop out as their body develops
@@LadyPashta because calling my extensive endometriosis that was causing severe debilitating pain "benign" is pretty darn minimizing. Normal people hear benign and think "harmless" "no big deal". It wasn't until a doctor said I had a very small chance of cancer that I started getting appointments asap where severe pain that was keeping me laying flat 22 hours a day and nearly constant unexplained vaginal bleeding and discharge was considered normal and no reason for urgency. Cancer isn't there only reason to give a shit about people's suffering. If I'd of had cancer I wouldn't have been fired but because I have something difficult and embarrassing to explain and diagnose my employer basically stopped believing me. Because it was something "benign".
31:36 I'M SORRY BUT THIS IS NOT ALWAYS THE CASE FOR HYPERMOBILE EHLERS-DANLOS SYNDROME PATIENTS!!! I'm 41 and the disease is present all over my body. It's present in tendons down my thighs and down my calves. It's present in my hands and in my feet. This is a mistake to say if you're older you should diagnose it as joint hEDS!!! Then again, the patient may not get the proper care they need from other doctors, because you tried to generalize it.
I cant wait until they start paying more attention to the overlaps between autism and hypermobility spectrum. Or even just each one of those in the detail they deserve. I would argue even those are the same disorder. Its neuromechanical developmental in nature. Proprioceptive disorders. Movement disorders. I have been saying for over a decade now, as a high functioning hypermobile autistic sufferer, they called most of this stuff mental when its actually more of a hidden movement disorder. The hypermobility made it impossible for then to even recognize the underlying dystonia of every muscle system, and some form of muscular Dystrophy. Functional or sympathetic paralyses, Autism might be a movement disorder more than anyone even realizes! You get parts that move or dont move differently, and this affects how the brain and our perceptions work! Wish they could even just pay attention to either one of these disorders on their own, but when you see the overlaps, it will blow your mind. Its appalling they have been so ignorant and rude to us
My head is so messed up from just being so confused about what to do with my shoulderblades for 3 decades. Amd thats just my shoulders. The main event is the hips and the bowel muscle that got stuck and made a crap ton of muscles all over my body stop working. That does terrible things to the brain!!!!! What the actual f**k?!?! If I knew that was a thing I could have said something about it. I didn't even have the sense to just say, my neck hurts too much, ever since age 5. Running always made my upperchest sore and the impacts to the back of my brain from every wrong footstep just normal walking adds up over decades. I'm high functioning and there's days where I'm questioning if I have dementia/parkinsons, bouts of confusion there is no adequate words to describe. Best I can do. It's all the motions ever experienced all packed into less than 1/10 of a second at any given moment. Hyoermobility is the ultimate mimic. It can mimic just about any other disorder in existence. Add some autism in the mix to make it even harder to describe things and distort the senses even further. I pretty much had to dissect and decode all the mechanisms I could identify over the past 2 decades to figure out how to translate how different symptoms present themselves in much different ways than what is considered common or normal. It's actually a real bear to deal with. I'm high functioning and I can barely work a job because theybleft me so co fused about some basic stuff they should be teaching by the 1st grade. If you wanna make someone sit in a classroom, the least you can do is make sure they can even sit right to begin with. If you want someone to write, make sure they can even hold the pen/cil the right way. These simple overlooked things screwed me uo to where I can barely work as an adult. Quit f***cking around!!!
I'm basically tracking this stuff and doing a lot of stuff that should be other people's jobs. And I don't even have a job!!!! Amd I'm overworked all the time even when I'm being lazy so you can f**k off if you wanna just talk smack and be a rude ignorant piece of crap. Just because I don't always sound like I know what I'm talking about doesn't mean i don't know what I'm talking about. I might just be having a mood or joint disturbance that takes up more brain function. Sometimes there just is no words at all. It just disturbing and disruptive and there isn't anywhere near the level of support needed for us to thrive. I know because I have chronic postural instability, there is rarely ever anywhere close to enough support anywhere, the brain included, it requires a whole different level of support. I have "mild" hypermobility and this is the stuff of nightmares!!!!!!! I get a taste of it all and it's enough to put me in the same camp as those with the way worse forms, because of all the difficulty it causes. I should be working with doctors, but not as just a patient!! Our system sucks for such advanced medicine and technology. What are we even doing????
There is no link or "overlap" of hEDS with autism. It is a coincidence you are seeing. Maybe because autistic people tend to use the internet a lot and therefore see things like EDS and WANT there to be a connection, so they comment on it. EDS has nothing to do with autism.
For 85 or 90% of people who have Ehlers Danlos Syndrome they don't know which genes are causing the problem yet. So the doctors can only go off symptoms. The hyper mobility test is only part of the criteria. Until they discover the problem genes involved this is how they diagnose it for the people who don't have known genes. I have never heard of a blood test.
You don't have to be hyper mobile or have stretchy skin to have EDS or another connective tissue disorder. One can have unstable or loose joints and soft, thin, fragile skin. He's a Dr and says "Pit-chures" and "hype-mobility"
loose joints mean the same thing as hypermobile he explains that at the start of the video, also i think all types of eds include hypermobile except for veds
@@dumbmusorowan yes and a strong fight or flight mechanism.trigger points in shoulders realy hurts what are the symptoms of other types eds not vascular.i have stretchy skin in certain areas elbows maybe palms.nit fragile though doesn't bruise easily though I twisted my knee twelve months ago slow to heal I suppose scar tissue
It's a German name so I can assure you that it's not pronounced Ellers. If it were it would be spelled as such. But it is not. The "h" signifies an elongated "e" sound.
"Joint Hypermobility and It's Co-Morbidities" video. The word "IT"S" is a shortened form of "IT IS" or "IT WAS". No hyphen. Did you not learn proper grammar before getting your PHD? I stopped reading after that and questioned your credentials. Get a proof reader or go back to school and learn basic grammar.
Perhaps you may want to retract your statement and apply a little grace. The punctuation you call a hyphen is actually called an apostrophe. None of us are perfect.
Very informative. I had no idea about this , everything you have talked about i have had since i was a kid. Especially the writing. No matter how hard i try i can't write good and its painful
I don’t know how many times I’ve tried to explain: I don’t have hyper mobility because I was a dancer, I was a dancer because I had hyper mobility! I got so much attention for my “flexibility.”
I'm sure you did! It was so easy for you to turn out and do the splits. Your arabesques were probably very high. Do you have pain issues now?
im also hypermobile but i am not flexible in my splits, not naturally. As a dancer I was very flexible in my back/spine, and in my ankles and feet. As well as my hands and shoulders and my pelvis/hips. I cant do the splits easily but I was always able to pull my leg up way farther then it should and only now i realize I was pulling it out of alignment and now i deal with my hip not staying in place constantly and it causes me so much pain....
i was always confused when i pulled a heel stretch and people would say "omg you are so flexible!" when in reality i was far from flexible in my splits and stuff. I was always super flexible in my back tho. And now everything that was unusually flexible in cheer and dance are now a daily nuiscance and make life miserable.
Same for me, but with gymnastics.
Conversely, my hypermobility has stopped me from dancing. I like belly dancing and breakdancing, and I struggle to get precise movements because everything is so flip floppity.
Thank you. I was taught that I was just a whiny kid and told “you shouldn’t have that kind of pain, you’re too young. “
And they’d leave it at that. Now I’m in my mid 30s and all my joints just kill me now.
They are abeilst, they said the same thing to me, but I know how to hiss, who are they to claim superiority over another just becuase of age?
They are just jelous that you are going to have what you need, unlike them, what they want.
Now in my 50s I understand what you are saying only too well. I was often at the doctor's as a child and was just told it was growing pains.
Me too. I was told I was like an old women when I was 10
Try eating more saturated fat from grass fed lamb + beef. I have hEDS and that is what is keeping my joints good even though they are very hypermobile. If I dont eat it every day they start to get achy / painful. But I am on a ketovore diet. I avoid most foods as they affect my joints. A lot of it is diet related or that is my experience.
Same here! My mom had to take me to the Hospital so many times apparently because she said I’d be screaming in pain and I’d be saying that my knees hurt. They’d be red and swollen but she said by the time we got to hospital and had a doctor see me, I’d be fine and running around laughing and playing.
Now I know that it was likely related to my JHS and my knees are my biggest source of pain due to hyper extension
I don't understand why the Beighton score doesn't take hyper mobile shoulders and hips into account. Those are my most affected joints.
same
Same here
And they're big joints
Same, my knees don't but they used to when I was young. My hips are the most obvious together with my hands and wrists, and those are the joints I've had issues with.
Fr. I shouldn’t be able to slip into the splits with 0 pain despite never stretching. It’s not like I’m a trained dancer or gymnast for example.
Edit: and despite that I get a lot of hip pain and stiffness? It’s so odd
If someone HAS PAIN, it is NOT BENIGN!
Can't edit, so - HSD is what he is talking about. It's not benign, but it's not hEDS, either. So they called it Hypermobility Disorder. Was the term out when this video was made?
I had so much pain - the doctor diagnosed me with rheumatoid arthritis even though all tests were negative. Got prescribed immunity suppressants , steroids , heart medication. I was just about to pop the pill until a gut feeling stopped me . Turns out I had hypermobility syndrome which got activated because I started running . Yay
Regarding the Mayo clinic handout, they even found a correlation with high academic achievers?? Holy cow, I'm so glad that the science is finally starting to coalesce around what we see described in the community.
Only because we’re seen as neurotic…. Not a great assumption to be made about us when we need to be taken seriously.
This was well done. I appreciated that he is more focused on improving quality of life for symptomatic patients than naming and classification based on arbitrary made up scales.
I agree.
Yes! The whole functionality thing is the most important thing to me! I'm 70, still very hypermobile, and movement and pain management is the key for my EDS pain control!
I have very severe hypermobile Ehlers-Danlos syndrome and wasn't diagnosed until 2018, when I was 36. I had to figure it out on my own and then find a geneticist to confirm. I have had dozens of surgeries, but to name a few: scoliosis fusion and rework with extended fusion t3 - l3, 17 surgeries on my right foot ankle and calf, 12 surgeries on my left foot, right hip surgery as my glute tendon completely tore off my femur, SI joint fusion, currently have pelvic prolapse of my colon and my bladder but trying to hold out on surgery for as long as I can, Left knee scope for torn meniscus, My left thyroid removed, my appendix removed, lymph nodes removed in my throat when I was a toddler, two c-sections, and the list can go on.
Surgeries I currently need: I have four tears in my right shoulder and three in my left shoulder. I have severe TMJ that needs surgery. Because of the TMJ, I am going to need probably all new teeth by the time I'm 50, currently I'm 41. All of my teeth are broken and have chips and cracks all the way to the root. I can't wear anything to protect my teeth, because when I take it off in the morning my jaws dislocate and it's very painful. I have three tears in my left hip and one tear in my right hip again. I can only sleep on my back, no longer on my sides or my stomach. I have three severely bulging discs and arthritis in my neck. I've got severe arthritis at the bottom of my spine as well, well all throughout my spine. The cartilage in my nose has torn and it is about to break through the skin, so I'm currently searching for a nose surgeon who knows how to fix it, so that I don't have to pay for a nose job with a plastic surgeon. I've gone to four doctors and all of them have told me no. I have tears in the tendons in the back of my knees. I have carpal tunnel syndrome in both of my wrists and my fingers fall asleep or hurt, just depends on the day. I cannot write unless it's a short note. I'm trying to do everything I can to stay out of a wheelchair. I currently have two children ages 9 and 11. And thank God I have a wonderful husband who is my soulmate!
I also have a ton of other health issues, a broken xiphoid process, extreme pain in my ribs, moderate POTS, ulcerative colitis, hiatal hernia with GERD, mild to moderate gastroparesis, motion sickness, constant heartbeat noise in my right ear, migraines, CONSTANT PAIN ALL OVER MY BODY ESPECIALLY MY LEGS AND SPINE, depression, rosacea, the list goes on and on again.
I'm excited to see that more and more people are getting educated on Ehlers-Danlos Syndrome. Many doctors just think it's a mild condition where you may dislocate a joint or have subluxation, but it's a beast of a disease.
Thank you for educating people and for this video!
❤❤❤🦓🦓🦓❤️❤️❤️🦓🦓🦓
God bless you 😇
Good God. I am so sorry you are going through all this. Your children are young. Why did you have kids with all those health issues?
I'm so sorry you have been suffering like this.
@@patientzero5685 My health exploded in 2014. Before that, I wasn't on medications, had only had a couple surgeries, and worked full time, running a bank. I knew I had scoliosis, but no other health problems that I was aware of. I had my kids in 2012 & 2013. In 2014, my husband, who was an officer in the Navy Reserve, was called to active duty for 14 months. I had a 2 month old and a 20 month old. My mother was having an affair and my parents were going through a divorce. My only sibling, my sister, was at the peak of her alcohol addiction, and we didn't live close to any other family. My friends all worked and had their own kids they were raising. The only help I ever got was some people at church would bring me meals. Half way through, I tore my meniscus in my left knee and had to have surgery. Plus, I had terrible anxiety. I was on crutches with 2 babies and no help and had been dealing with anxiety. Being alone and dealing with anxiety brought back trauma from my childhood. My mother is a Narcissist, my father is an enabler, and I was the family scapegoat. I turned to the streets for love and went through sexual trauma repeatedly. At home I went through physical and mental abuse. I think in 2014 my body just broke after having been through so much in my life. After the knee surgery, I started getting sick. It started with fibromyalgia pain. Then I started having POTS issues and IBS. Things just started just spiral very quickly!!! However, I didn't have my kids until I was 31 and 32. All my life, my deepest desire was to be in a secure marriage and to be a mother. I don't regret it one bit, because my daughters constantly give my the will to keep fighting through more surgeries and more pain. Anytime I start to get melancholy and feel like giving up, I think of my husband and my kids. I'm thankful I didn't know before I had kids, because I probably wouldn't have had them, because I wouldn't want to risk them having EDS. However, I'm grateful to say that neither of them have EDS. They have a few characteristics, but not nearly enough to be diagnosed with EDS. They are strong and they are athletes. I pray to God all the time that EDS stopped with me, in my bloodline. God has always given me the deepest desires of my heart and I am completely faithful that my grandkids won't have EDS. I won't have 100% certainty until I actually have them, but I just have peace about it. I can't explain it. There have only been a very few things in my life that I have felt peace about like this, but I have that peace. God is good! I trust Him.
@@patientzero5685 But thank you for asking! I like to share story, so I can raise awareness and so I can also give God all the glory for bringing me, and continuing to bring me, through the fire.🙌🏼
I cannot tell you how this video changed my life. I have always been "double-jointed" in all my joints. I did "tricks" for friends as a kid like they describe here. I beat the sit and reach records in school, and was a gymnast. I eventually ended up dislocating shoulder as a kid many times, and knee and thumb as an adult. I have flat feet. I had a hernia at age 6. I am tired all the time. I have depression and anxiety. I am 43 years old (still as bendy as I was a kid). No Doctor I have ever seen for any of the dislocations, hernia, depression, etc. has ever mentioned that they might be related. I don't think there is anything I need to do as far as treatment? I work in a very physical job, which I think helps, since the muscle somewhat keeps the "blown out" joints in place. For my whole life, the pain and injuries have been dismissed as me being dramatic. I am not sure how to process this , or where to go from here, but I feel a lot about this.
For 5 years, i was facing depression, anxiety, chronic LBP, until one day a spine specialist diagnosed my symptoms as JHS, and your 50 minutes video is the answer i've been looking for all of these years. So... thankyou, thankyou, thankyouu !!!
Congratulations on finding this information! I hope it helps you in your journey to improvement.
For just hypermobility (especially if there aren't significant problems with dislocations etc, just flat foot or abnormal gait / posture), not looking at EDS might be fine, especially if they're older and have had plenty of time to see co-morbidities come up, but if there's POTS, fatigue, pain, GI symptoms, anything like that, not looking at or considering EDS is horrendous practise. CTD's causing blood vessel laxity is not just increased, it's almost absolute, especially or mostly for those that qualify for hEDS/EDS. Yes nervous system problems might be a contribution factor and might be a large one for some, but those that have many of the following: POTS, GI, MCAS, pain, muscle tensity, various malabsorptions, hyper-adrenergicism, hypovolemic form, etc. alongside what is clearly a CTD, should be considered for what it likely is; a distinct CTD, currently called hEDS. Also the label HSD (Hypermobile Spectrum Disorder) is another (although maybe a partly controversial label), and that accounts for a gap (between hEDS and general hypermobility) where many of the above mentioned symptoms are experienced, but with less thoroughness across the mentioned pathologies in presence of them. Also yes it's the responsibility of a doctor to connect the dots, but most are too ignorant and arrogant to recognise when they cannot and to look at say EDS.
I have hypermobility and I used to be a gymnast, wannabe contortionist, cheerleader and power tumbler. I now have psoriatic arthritis which has injured my spine, shoulders, and MTP joints, and that impacts some of these exams. Knees and elbows still crazy hypermobile. I’m over 40.
wish more doctors would keep some of these points in mind, especially the fact that it's not a fully understood thing. i can't get any sort of help with my chronic pain because i'm "just" hypermobile and that shouldn't be such a big problem if i don't have classical eds or marfan's according to the few doctors i've managed to see. being in ireland doesn't help because we really have no specialists for hsd/eds and associated conditions in the country, and our health service as a whole isn't really functional. but even with that in mind just having doctors know as much as is in the video would be a game changer :(
Ime same UK though j Eccles has found we have larger amagdalia so this is why we feel more pain mines in trigger points and flat fleet are you taking plenty minerals strength train as able do hard trigger points are meant to be sycosomatic any ocd
Same in Australia. Feel like we're 60 years behind US. My best physio was a rehab physio and best GP was younger one with interest in sports medicine. Also one ER doc knew about EDS and dysautonomia, but was screened for heart attack first!
@@TheMazinoz I mentioned dysautonomia to a doctor, after I was extremely sick for two months, and the response was "what's that?" I'm in Australia, too. My physio is treating me for hypermobility, using clinical Pilates. But, I would like a formal diagnosis.
@@annesilver8387 H Levy article in Gene Review on Hypermobility - show it to said doctors. Very detailed. Honestly I know one GP at Griffith University teaching students still holds outdated views from the 1960s on it. That is what you are up against. CBD oil helped me a lot if you can get it somewhere, internet etc. Wish they'd make it cheaper and easier to get. Also try arthritis relief measures - creams, Epsom salt baths, mg supplements, heat, etc
Yes it's quite ridiculous that patients here in Ireland have to travel abroad for assessment and treatment for eds. Most of these medics who tell a person to do physio and take ibuprofen have never experienced chronic pain, they have no idea about the different layers of pain a person can experience. Someone on Joe Duffy's show recently mentioned a rheumatologist in private practice in Cork who has experience of hds/eds but unfortunately the guy couldn't remember the name!!
My mom took me to a doctor at age 11. Knee dislocations, inability to get up off the floor unless I pushed myself up onto my hands and knees first. Fell down stairs a lot. Ballet classes. Posture lessons. The doc said if it got worse, I had muscular dystrophy, if it didn't, it was all in my head. I made sure it didn't get worse. I am now 76. I can still touch the floor with straight legs. I still have the pain.
Doctors need to know more about EDS. My daughter in law gave up on doctors. Even her water therapywas discontinued by her therapist because it was doing so much damage.
Because she gave up she didn't see a doctor for neurological symptoms. The coroner said she died from undiasongesed and untreared epilepsy disorder on July 15.
She was diagnosed with EDS by Dr. Tinkle at CCMC.
She never could find a doctor to help her.
Her 13 year old son, my grandson, shows numerous signs of EDS. He also has severe autism and is non-verbal. I doubt he will get any treatment. He also has severe seizures and frequently ends up at CCMC. If he dies so will my son.
Doctors have to understand EDS better.
If I sound angry it's because I am.
She couldn't fin
I’m sorry for your loss. I wish I had an answer. I learned that doctors dismiss you quickly if they detect any hint of desperation from you. You also can’t be angry, complacent, ignorant, knowledgeable, nor can you have a long list of issues or a family history. You can’t sound like you have any distrust for doctors- and you don’t know anyone who does. Treat the doctor like a god and tell them that you have faith in them to help you get to the bottom of the diagnosis AND you know that they will set you up with rehab and any specialists.
Doctors are not Gods there’s only one God the one ☝️ he’s in Heaven lives in our heart “ he gives us enough sense to know our bodies, can a doctor go inside of you and know your pain ? You seemed to have a lot of ignorance yourself!!!!! 🙏🇺🇸
68 and just got assessed this year. Now so much makes sense, but I am going to PT all the time. Finding a PT who is hypermobile savy is so important.
I'm 71 and on a waitlist for genetic testing, but at this point it's nice to know my pain and chronic fatigue is not "in my head" as so many old school doctors told me.
Medicine nowadays does a good job of treating what will quickly kill you but are dismal in treating conditions won’t kill you but will make your life miserable.
In my older age, I believe the future of medicine should be focused on early identification and early intervention. That in my opinion is the best way to cut down health care costs.
Kudos for medical treatment focused at improving patient function, rather than trying to decrease the rating on a 1 to 10 pain scale.
Concerning early detection and early intervention, I believe that there is a significant percentage of people
with hyper mobility issues
who then go on
to develop chronic pain, decreased functionality & quality of life and in worst case scenario , fall victim to the opiate crisis.
What if there was a way to identify these patients and then treat their hyper mobility with strengthening the weaker muscles that make it easier to be hyper mobile? There could be the chance to be proactive- do preventative work to cut down chances of chronic pain, injuries and have better enjoyment of life.
It seems with hyper mobility, looser connective tissue is part of the problem; however, I think the other part of the hyper mobility is that there is one set of muscles around the joint that overstretch to be hyper mobile and maybe get more weak. Perhaps these stretched out, weaker muscles need to be strengthened to increase joint stability. I instinctively think that a balanced strength of all the muscles around the hyper mobile joint will improve the biomechanics and movement of the joint. Hopefully, the improved motion of the joint will result in less injury and pain.
For the kids who have hyper mobility but don’t have EDS, I think the hyper mobility causes posture changes & mechanical stresses which the body compensates for with altered body positioning and altered biomechanics. The end result is more injuries to the hyper mobile joint and the joint above and below the hyper mobile joint.
What if those kids could get identified early and be trained in body position awareness and also better biomechanical ways to move and cut down on future pain?
Already in Texas, school kids are screened for things like vision problems and scoliosis in elementary school and appropriate students are referred to see physicians for further evaluation and treatment. I wonder if in the future, coming up with a well designed assessment scoring for hyper mobility, figuring out if there are any hyper mobile joints that with appropriate physical therapist assessment & intervention with appropriate strength training could decrease “growing pains”, injuries in later life and in extreme cases, not be a victim of the opiate crisis.
In this area of hyper mobility & chronic pain, I am surprised that there is not a standardized way of describing the hyper mobility. I am disappointed at the lack of equal peer acknowledgement of physicians for the skills and clinical issues of well trained holistically oriented physical therapists.
I believe that a strict standardized way of assessing joint mobility (ideally developed with significant input by physical therapists) is important to better understand this hyper mobility issues. Additionally, a standardized hyper mobility scoring assessments must include scoring for the
big, more load bearing proximal joints (shoulders & hips),
what I call the “middle joints“ (knees & elbows)
and working further distal to ankles & knees
and finally,
the toes & feet and fingers and hands.
This way, clinicians can better understand which population of non-EDS hyper mobile patients would benefit from earlier identification and intervention.
My intuition tells me that problems with the feet and ankles and with the hips are more likely going to be related to maladaptive, inefficient movement that cause more pain, producing joint issues in later life. After all, it is the feet, ankles and hips that bear the weight of the entire body. But the development of a standardized mobility scoring scale would be a good start in better understanding the whole consequences of non EDS hyper mobility.
I am non EDS hyper mobile such that I n college days, I had good flexibility in dance class, could do splits on both right & left legs and then lie my body completely flat against the front leg with my forehead on my knee kind of stuff, as well as have flexible feet who probably developed poor biomechanics that really put undue stress on the lumbar spine which likely contributed to more than one round of lumbar spine steroid injections and is post lumbar laminotomy and foraminotomy.
Regarding physical therapy, physiotherapists would tell me that I'm too flexible but gave me standard exercises without any adaptations, it would solve a problem one place but create another somewhere else. I've been trying weightlifting exercises again and again but always ended up with terrible pains which were not muscle-related. Now when I see the slide about exercise therapy I understand why! Thank you for sharing this presentation, I understand now that it is crucial for me to look for help and exercises that are specific for joint hypermobility.
I have very severe hEDS. I've had over 30 major surgeries on my joint and spine, especially my feet/ankles where I have all artificial tendons and ligaments. I will tell you the best exercise for me has been to walk, ride my stationary bike, and do simple strengthening exercises without weights. It's about movement and consistency without strain and without much stretching. Stretching can be dangerous, because overextending is easy to do and stretches out tendons and ligaments which leads to tears or breaking. Once I tore my glute completely off my femur doing a simple stretch. Plus, never stretch before warming up a bit. Just what I've learned over my 43 years.
Wow. Excellent presentation
Thanks for explaining why my writing is ugly and painful! I was told by a teacher's aid in elementary that I held a pencil weirdly, but didn't think much of it. I totally agree with it being normalized in families. My dad and I can both pop our hips out (which I recently learned from a doctor is called a subluxation and he was shocked that I could do it on demand), and with relatives with elbows that bend even farther back than mine, I didn't think it was worth mentioning. I have a 4 on Beighton score, but my feet are hypermobile, and I've been going to physio/manual therapy to get subluxations and stuck joints treated for over a year while waiting for a connective tissue specialist. I'm pretty sure there's something going on, my family also has gluten intolerance, POTS, allergies, dental and eye issues, as well as having long arms, so I'm thinking it's hEDS, which 3 physiotherapists also suggested, but physio doesn't look at skin and scars, so that's why I'm waiting.
I have EDS and had to have three surgeries to repair ligament tears all over the pelvis and pelvic organs due to an uncomplicated childbirth, which is how I first was diagnosed with EDS 12 years ago (I had no clue before). I also have interstitial cystitis which developed a few years ago, and I from what I understand IC and RA (rheumatoid arthritis) are both far more common in EDS patients/families than the general public. I have grandparents on both sides of my family that had RA. Since IC has to do with mast cell activation often (which is a problem with EDS causing POTS), this makes sense. I also have a brother that had an inguinal hernia at a young age, and my brother and Dad both have hiatal hernias. My brother and I both have what is called the "marfanoid habitus" which means having long, skinny arms with tiny wrists and long, skinny fingers (called arachnodactly). I have POTS as well as migraines too, and my blood pressure tends to run low while my heart rate is always elevated (to compensate for vasodilation of EDS). Also have digestive issues with my lower gut with IBS varying between slow then fast motility that cannot be connected to anything in particular.
@@jercasgav I didn't know it could cause such issues, although I'm on the wait list to get an MRI with dye to see if I have any damage to my hips from frequent subluxations as a kid and teen. Not looking forward to the dye because I'm very sensitive to a lot of things, and seem to have allergies to just about anything (recently discovered apples, peaches, and things in that category bother me, but more common it's synthetic materials like strong adhesives, added fragrance, and some cleaning products).
I was told for years it was just growing pains and low blood pressure, so I'm glad to have a few answers now. Have you ever tried any compression garments like socks? I find them to be great, both for helping with POTS, and with ankle and foot stability. I've heard that compression shorts can help too, or the full tights, but I'm allergic to the tights (at least the ones my local pharmacy has), and I haven't found shorts that fit right, so I stick with socks, and gloves as needed for wrist support.
Also look at Marfan syndrome
@@joylox the die generally makes me feel unwell unless I drink water and electrolytes like a fish and pee like a racehorse lol. Having said that it also makes me itch so whenever I absolutely have to have it I will take kidney support herbal remedy, and also Benadryl. Contrast dye is not recommended for people with history of kidney disease or anybody with a GFR lower than 90 so please inquire about that and have them do a blood test for the GFR number before you agree to the contrast dye
@@jercasgavthis partially sounds like my life
Excellent. Thanks for this knowledge.
What an incredible presentation, I learnt a lot and it was extremely validating! I'm also very interested in the relationship between hypermobility/connective tissue disorders and endometriosis. I didn't see anything about this relationship here, but wondering if anyone knows anything about this relationship/ other resources which discuss this. Thanks!
Great presentation, I learned a lot about my joints here. Thank you for sharing
thank you so much for the level of detail put into this!! :)
Im 40 and my Beighton score is 9/9 still(i dont train to keep felxibility) I am just finding out about these conditions and that this is probably what i have had all my life. I did ballet, tap, jazz for 5 years from 10-14. Multiple sprains when i was young, elbow dislocated as a baby, broken wrist at 12, etc. Lots of other indicators but yea this is so crazy to learn about at my age. Thank you for the video. Very informative.
Very interesting. I'm 67 with hypermobility and fibromyalgia, 3 of my children are the same. I've been sea swimming almost every day. Supported exercise (on water) is marvelous and pain management is significantly improved, especially in winter at very low temperatures, however, the clumsiness on land, brain fog, disorganisation and forgetfulness are embarrassing.
Do you have Asperger's to? Where is your main pain
@tomsale5142 I don't know but I think I have ADD, and though pretty much calmed down after journal therapy I have CPTSD. My concentration is dreadful. I'm a grasshopper, my mind jumps from one subject/task to another. I am very artistic and my poetry is published FREQUENTLY and I think grasshopper mind might be part of the artistic temprement. It's how we can make leaps of the imagination and create new ideas.
My pain is in my muscles and joints. Shoulder, hips and spine are bad, an osteopath has had to realign my facet joints many times, although not as often now I'm older. I get terrible cramp in my calves, hamstrings, and back.
Are you taking Gabapentin? If so, please tell your doctor to wean you off of it. It causes 10-20 points of IQ drop, as well as brain fog, dizziness, etc. I refuse to take it and have almost no brain fog anymore.
@@LadyPashta do you have fybromyalgia Asperger's
@@tomsale5142 No, but the point here is to not take gabapentin unless absolutely necessary, because of the terrible side effects.
Oh my, I sure wish this was more out there in the medical community earlier. I am in my mid-60s and didn't get diagnosed until then... It was a fluke that I even heard the name when I found out my dad was not my dad and a new half-sister asked me if I had it. I called my Dr and she got me a Geneticist immediately (the next day) for over an hour by phone as it was during COVID. Also probably have POTS MCAS and Dysautonomia. I was already disabled by then. All the suffering and all the meds and MRI with contrast dyes that ruined my kidneys which are now failing and on dialysis... My mom might have also had this interestingly enough! She knew something was wrong with me and took me to so many Drs. I used to sprain my ankles every weekend while running and playing. Had to buy crutches as it got so expensive to rent them! I blame the Medical Doctors for being taught that when you see Zebras, think horses because it's more probable. Guess what? There are SO MANY MORE OF US THANK THEY THOUGHT!!
Thank you for this! This is something that I asked about a couple of years ago and was largely dismissed for it. But I'm pretty convinced that this is why I am in pain most of the time.
You need a proper assesment. It is often overlooked.
Thank you
My Neurologist performed the Hospital Del Mar test on me, and I passed enough of it to get my Diagnosis of EDS. He took in Consideration my age and knew that I won’t be as hyper mobile as I was in my childhood and teenage years. The type I was Diagnosed with is the Classical subtype, which affects my skin, and my ligaments more. I am hyper mobile in my hands, my neck( I can turn my head like a owl) and I am hyper mobile in my waist area and some in my left elbow but not too much in my right elbow ( my dominant arm). I am also hyper mobile in my knees. My mom and other family members have Osteogenesis which shares the same genetic mutation with Classical EDS.
Do you know more about the same genes you speak of? Can the same thing differentiate into either and is just "luck" for lack of words? Or the family won genetic lottery? I have hEDS and curious..hope im not brain fogging. Cheers
@@dana102083 The gene that causes my type of EDS is the same one that causes Osteogenesis, which is what my mom and other people in my family have. I have EDS- Classical type. The COL5A2 is the genetic mutation.
#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!
@@shannongreenwell1278 gene expression happens because of the lack of proper human nutrition. Humans don't have mutated genes or damaged genes.
#DrThomasSeyfried and several other experts now know that it's our nutrition...
@@dana102083 I read books on it and it is the COL5A2 gene that is responsible for the type of EDS that I have. I don’t think of it as a “ 🍀 of the gene lottery “. I wish I didn’t have it nor did my family have Osteogenesis Imperfecta.
Thank you ! I'm showing this to my doctor. I recognize everything! But my doctors can't find the problem ... My hopes are up again. Greetings from Belgium!
Many of us have Small Fiber Neuropathy and some other conditions. Thanks for your knowledge and efforts.
How do we no if we have this and not just fybromyalgia
@@tomsale5142 They are 2 different health conditions, but it is not impossible to have both.
I don’t like how he says he mostly diagnoses adults Hypermobile Syndrome. If they have HEDS they should be diagnosed with why they are. Not just to make it less confusing.
You might want to be zebra, but his point is that if the clinical approach is the same, it’s not useful to divide the patient population.
I understand that now that I understand this a lot better and I rewatched the video now and see your point. Thanks
@@Luna_Loves_TheMoon I completely understand that now I that I know more about the conditions. I’m actually only diagnosed with Hyper mobile syndrome and thought that I would for sure be hEDS so this helps me feel more validated. Thanks for bringing this up and I rewatched the video and appreciated more now that I been through this journey and learning about them and trying for diagnosis
I’m not sure when I fall on the hypermobility spectrum as I don’t think I fit exactly. But given my mom looks to be classic Marian and my kids are definitely hypermobile in their own ways I believe this may be an answer to my admittedly mild but unusual health history. I have the low blood pressure and high heart rate. Despite being dexterous and an artist I’ve always held a pencil so that I don’t have to use my overflexible most distal finger joints. When I was 12 I injured my SI joint after one track and field practice and I’m still dealing with muscle slings and tension pain issues from that hypermobile joint throughout my body to this day. I’m myopic. I have heartbeat arrhythmias. I shifted one rib posteriorly and it still shifts back. My right clavicle is out of place because my manubrium is too flexible and my first ribs and cervical vertebrae similarly have issues. My jaw was injured during wisdom teeth surgery and that pain took a month to subside to a livable level. My jaw has never been the same. Uncomplicated childbirth destroyed my pelvic floor. I’m not sure exactly what all kinds of prolapse I have. My surgical scars all stretched out. All the postural adaptations listed in this video I have. I suppose our bodies need to feel a certain amount of tension for homeostasis to be achieved and distorting posture can help achieve that when your connective tissue is too flexible. I’m suspicious that a nutritional aspect may be at play, that supplementation may help a dysfunctional system build better tissues. In addition my family history supports the idea that we all have loose connective tissue in our intestines.
Very informative. It seems to connect a lot of dots and explain the health problems I've had since I was little. And why I went on to develop ME/cfs and POTS.
Me to 26 years CFS muscle pain worst symptom nowadays do you have autism to I had pots now that ok pain worse for me
it would also be cool if you did a sub class -talking abt the diff dx of fibromyalgia vs jhs. on reddit a lot of people complain that they were told they had fibromyalgia from their pcps when in actuality they later in life by their pts were dx with jhs-and have thought all along that it was jhs and pcps or old school rheumatologists just do the catch all condition fibromyalgia.
Wow, he has just described my posture in every single detail. I also have hyper mobility in some joints, but not all of them. The problem I am struggling last couple of years is neck shoulder pains. Am I the only one who sleeps ON their shoulders? I mean that I just bend it towards my chest and put my cheek right on it. Waking up in morning is totally not cool! I hope I will get my diagnosis one day:( I am just 29.
Dr. Tinkle - I have been diagnosed with hEDS by 3 different doctors. I must tell you that PAIN and DAMAGE is different between people! It will NEVER be possible to put us in a box since it is a FULL BODY CONDITION. It effects one person one way and another person another way and then someone else another way!
When I was young, I had back pain and headaches but mostly functioned just fine. Then I injured myself in my mid 30s and it never healed, leaving me in chronic pain for the rest of my life. I also got Adhesive Arachnoiditis apparently from "treatments" for my pain. Now I have TWO incurable conditions causing pain and difficulties for the rest of my life.
If I hadn't injured my back that day, pulling my kids in a wagon up a hill on a hike, would I be in a different position now? YES. I am almost positive that I would probably be having more pain than others, but NOT this 24/7, constant pain where I cannot function.
Everyone is different, especially regarding EDS. Please stop trying to put us all in a box, it won't work.
With eds we heal with keyloids is this what caused eracnoiditis is your pain all lower.back
Omg I use to hate writing because it would become so painful. It still does now.
Thank you for this video, it was the missing piece of the puzzle for me. Suddenly my whole life makes sense at 39 years old! I was beginning to think I was just lazy or something. I couldn’t understand why I was so tired and painful.
My daughter was diagnosed with this. We just learned the other day its hereditary. This explains a lot of things we both have and go through.
@@jillianmiller7506yes lost my mum last year to severe ms heds autism I have it my grandfather had it all related to autism fybromyalgia pain worst for me now 44
My partner is getting assessed for EDS and they're thinking hEDS. The weird thing is he was born c-section and still had bilateral congenital hip dislocations.
We prefer zebras, because while we may share symptoms or diagnoses, we may suffer to different degrees. We might not have one symptom but have another, this is why we call each other zebras. Zebras all have different stripes but they are still zebras. While their stripes may be more or less or thin or thick, they are zebras. #teamzebra #teamdazzle 🦓🦓🦓❤️❤️❤️
I hate that scale! Not everyone who is hypermobile is hypermobile in those specific ways! My thumbs bend backwards... but not toward my wrist. They go the other way... doesn't count.
I remember seeing someone bend it the other way and it did count, actually.
@@LadyPashtaI'm 43 years old and played constant sports. My body was damaged so badly over the years that my joints are breaking down. I was told that because I'm not able to demonstrate it NOW then it doesn't count
My child has this, what would the benefit be of gaining a diagnosis?
Knee pain at 15 told I had loose joints and double jointed....ie hypermobility.Age 19 vestibular migraines. As I got older.........raynauds, osteoarthritis, hiatus hernia, umbilical hernia, ulcers, sjogrens, fibromyalgia.....chronic fatigue, joint and muscle pain.
I have most of your symptoms muscle pain worst nurologist says my upper body pain is migraine without headache do you have autism to
I use Aplys test. Also I screen aorta via US rather than rely on family hx
it would be cool if you did a little sub class of this video to talk abt jhs, relaxin, pgf2a, and menstrual pain- how women during their periods have more period pain due to pgf2alpha, relaxin and how they are more immobile during this time and are prone to more instability and subluxations
Well it sounds interesting! I would appreciate if there is sources you recommend. 😊
Is there any connection with this and pectus excavatum that you could elaborate on?
Check it out; pectus deformity 13:19
I had flat feet as a child (full 9/9 EDS dx at 30) but now have a manifestation of tethered cord (common in EDS) diagnosed at 41, and now I have high arches, kinda crazy. After cervical and lumbar fusions and just 11 years later, I hardly appear hypermobile in those joints that are tested due to arthritis. But they are still problematic and unstable along with common hypermobile joints in spine, hips, knees and shoulders. I guess I call myself lucky that it was caught when it was because I was already on disability when discovered.
The best thing I have found is the low intensity vibration machine … works wonders for my SI joint that is very unstable. Plus added benefit, I feel great and have more energy. Why I didn’t know about this machine before is beyond me. And btw, I am in my mid 60’s
I literally bought an oscillating car polisher with a foam pad and lambs wool cover. It’s wonderful.
Im really interested in the link between hypermobility and ADHD, fibromyalgia and PCOS. As someone who has all of these, i see a lot of people who share these comorbidities (and usually bariatric patients too). It makes me wonder if dopamine sensors or production (secretion?) is affected by the changes in soft tissues present in EDS or hypermobility.
Excellent presentation! Let's say I suspect I have some hypermobility condition that I want diagnosed. Where would I start? Is there a specific type of dr I should see? My primary care dr refuses to take me seriously. Thank you!
Either a Geneticist or Rheumatologist, you still need your GP to write a referral tho.
I was diagnosed by a neurologist with my EDS.
@@sarahb.6475in UK?
I finally understand.
I really need help. Can't go on like this anymore. I'm suffering too much to explain and or search for help. I'm desperate.
I’m not sure if this will help but if you got through today, you can get through tomorrow.
I have joint hyper-mobility and have had dynamic movement in my shoulders, ankles and throughout my spine- causing wide spread pain,
Have you found anything that works has it got worse with age does your muscle pain deal Luke migraine
the person stannding in the top right of the sslide in 22:50 is me standing aha and CONSTANTLY being told, stand straight, ur head is too forward, why are u curving your shoulders. Move them back.
Me to all my life
I have EDS and I suspect a lot of my dad's side does. I "hang on" my joints and wonder if my grandma did too, as she has had her knees hips and shoulders all replaced.
I cant' do the two hand things, but the others. I'm in my 40s and am now in a stiff and painful stage. Had a dr tell me i can't have hypermobility because I'm short and obese (as if i was born obese).
My GP has been seeing me for hypermobile joint injuries and instability for 4+ years and still won't write down "hypermobile" in my notes. All other healthcare professionals (physio, chiro, RMT, joint specialist) have noted me as hypermobile.
I am currently on medical leave from work because I wasn't able to manage my symptoms (yet) and so I'm losing income while my doctor just keeps asking me to lift my arm (range of motion test) and earning his full income. It is so. frustrating.
Pain everywhere.
Regarding change in male:female ratio after puberty - could it be that there is Greater incidence in women related to future child-bearing? A natural process related to hormonal changes n women to support childbirth perhaps? It would be interesting to see Caesarian rates for obstructed pregnancies among the non-Ehlers Danlos hyper mobile.
It is thought hormones play a role and increase ligamentous laxity. Stretchy hips assist childbirth. I was born before the doctor arrived. Mother and me are hypermobile.
@@TheMazinozI heard that too.
I’m worried I have an undiagnosed condition or syndrome having to do with all my ligaments and or tendons. I’ve dislocated my shoulders 11 times. Had surgery on my left 10 years ago and surgery on my right a couple of weeks ago. I have instability on the left side of the jaw and had orthodontic work done as a kid but now need more. I constantly pop my ears throughout the day and have woken up with my jaw dislocated and needed to massage it back into place several times. I have been experiencing ringing in my ears more frequently and loudly lately. All this seemed to get worse after attempting unsuccessfully to scuba dive some years ago. I was going to start on the TMJ path until I dislocated my shoulder again. There is a spot in my spine around my lower middle back that clicks/pops when I straighten my posture and has been getting more and more pronounced/uncomfortable over the years. My knees frequently lock or stiffen up on me and I have to self adjust in different ways to get them to return to functional and I have a strange ability to pop my ankles over and over. I need to get to the root of the problem rather than treat each symptom as they arise. Any thoughts or advice? I’m 34 years old.
Where is your constant pain
You need to get to someone who is versed in hypermobility disorders. Not everyone is. It took 20 years to be diagnosed with hEDS, including many ER visits, lots of GPs (hypermobility is WAYYYY outside their education) and two rheumatologists. Take as many previous records as you can get, ordered by dates, a list of current meds (including OTCs + vitamins,) and any very recent bloodwork you've done (in colour, if it's like Quest or something.)
The Ehlers-Danlos Society also has a series of videos on education, things you can do at home, and a guide to finding some doctors. It doesn't cover everyone. hypermobile EDS doesn't have a genetic test but the other kinds do. Hypermobility Spectrum is different, just similar.
Good luck.
@@dlm4708 Thanks for the tips. Starting PT and am planning to see a rheumatologist soon.
@@Heffey02 I am so happy for you. Don't be discouraged if the first one says there's nothing really wrong. My first one did and sarcastically suggested a wheelchair... which I'd actually NEED in two years, if any place I've lived in 15 was accessible. :P
Come armed with the clinical criteria, a list of comorbidities + side effects from EDS, and if you need to, start investigating THOSE with specialists. I got other stuff diagnosed before the 2nd rheumatologist, which helped with EDS specifically and not just "hypermobile spectrum."
If you DO have HSD (hypermobile spectrum) that's probably actually better than EDS, so don't 'hope' for the worst thing. But don't fall apart if you have 'the worst thing,' either.
@@dlm4708 Thanks again. Curious to see what information I start getting as I continue to look for answers. The arm is slowly regaining range of motion. PT, time, and rest seem to be helping so far. Hopefully, the surgery was successful in securing the labrum, and now I can focus on the stabilizer muscles and range of motion. Then it's on to the jaw...
Thanks for sharing about EDS... I've reading about it being more common among neurodivergent, and many have Sensory Processing Disorder and don't feel pain, so maybe that is one reason some say they are asymptomatic?
I have high myopia and hugh astigmatism, and I have EDS, not sure what type yet, I still to do genetic test, but for now hEDS....
SPD for me let Ng before chronic pain caused me painfull hair travel sickness labels never heard it not causing pain.niw diagnosed as yourself 44 heds
Autism ADHD ocd my grandfather had it no pain but disc herniation detached retinas fybromyalgia awful
Has anyone got advice on joint pain management and how to sort out the associated stomach issues. namely pain and diarhrea when eating anything but meat
Heal and then slowly rebuild gut. Can take years and has many factors. Until then.. eat meat.. and eat anti-inflammatory and live anti-inflammatory ... the elemental or gaps diet are fabulous fast approaches
@@purehoneyy.b THANK YOU! i will look into those diets.
Anti-inflammatory is the goal in everything you do in recovery.. you will rebuild your body better ❤️
Red meat makes me have diarrhea almost every time
It’s just like he put a picture of me up there.
But what if you don't have so much joint pain but the hypermobility might be causing other problems like POTS and muscle spasms. It looks like you wouldn't be able to get an assessment which could be useful in treating other associated problems.
Do you have any wound healing or fragile skin? Bruising easy? Fatigue? Heart issues running in family or yourself? Allergic reactions or sensitivities? They all can occur solo of together. Each type of EDS have varying degrees of joint hypermobility. The hypermobile type is just more common by far. I agree having a diagnosis can help get traction to point to other issues. I have hEDS and even though my doctor knew i was hypermobile, it didn't allow for connection to having a csf leak, even though my symptoms matched. Weirdly as I typed he mentioned headaches but he didn't mention csf leak lol Keep looking for answers. Find a new doctor. Get an online genetic test. Research and joint fb groups. My hypermobility cause way more orthostatic issues at a younger age... Age has definitely decompensated my joints. My limbs get icy cold and super vasodilated. I have pots like episodes but only my BP drops when i stand. I cant tolerate heat and plastic material rashes me easily. I can tell you salt and hydration is the answer. I aim for greater than 5g of sodium a day and another 5g of potassium MINIMUM. I feel like poo if I fall short. I put it in all my water. Movement and to retain mobility is essential. 🙏
How do you get your potassium?? Tia 🙏🏼
I don't have much joint pain and no dislocations though I am very flexible. I have POTS, "migraines", bad scarring, muscle pain in the mornings, numbness and tingling in my hands/feet, IBS, TMJ, feet hurt for my whole life when standing, etc.etc.
I am 51 and I am still hypermobile in all of my joints including my feet.
I think it's good to orient hypermobile people to careers sustainable for them + tneir employers. (Some joint injuries can be very long-lasting.) There's not much reason why hypermobile folks can't do pretty much any type of public service admin or other jobs with lower physical demand.
Does anyone here with EDS have bone pain, like pain that feels like it goes up the bone shafts? I have had this kind of pain for years now, and not one single doctor will even talk to me about it, or they will assume it is anxiety or joint pain. Yes, I get joint pain, but this particular pain is shooting pain up my bones, like a metal rod is being hammered up my bones, or my limbs are suffocating. I don’t have an EDS diagnosis, but I’m looking into it. I was wondering if EDS would explain it. I have never spoken to anyone who has had this kind of pain, and googling has yielded no results. Thanks
Forty years ago I saw an orthopedist in El Paso Texas. When I told him my very bones hurt. He practically laughed me out of his office telling me bones don’t hurt. One of my many negative dr appointments.
I get this too. At one time I was walking around with my arm held at 90 degrees bent at the elbow almost like pushing a trolley/pushchair. My partner used to compare me to the caretaker out of scary movie. I stopped taking birth control pills and now I rarely get that anymore. If you take birth control maybe try stopping for a month or two and see if it eases for you.
Never thought to actually Google it, but from a quick Google search just I came across this.
Progestogen-only methods of contraception may not be suitable for people with hypermobility disorders, as the natural hormone progesterone can lead to joint laxity and pain, as well as the risk of injury or dislocation.
I know exactly what you’re talking about. As a kid I described them as growing pains and they kept me awake many nights- I would roll around on the floor and cry. I was like 4 years old. I still get these growing pains but I have a suspicion the pain is the periosteum (Periostitis). Hyperlinks are not permitted but this video shows you (cadaver).
ua-cam.com/users/shorts2Bck1iFl3ic?si=GYpPrFSTSxFgWnLw
I have that in my spine!
@@patientzero5685I had that as a child, as described. Until about age 8/9
At 17:00 he talks about hipermobility becoming a liability for ballet dancers as they advance in their ballet training and uses as a source the fact that advanced ballet courses have a fraction of the dancers that started at age 11....I think this is incorrect, hipermobility in ballet is ALWAYS a PLUS, it`s not the reason why dancers drop out of ballet, they drop out most of the time because they are expected to maintain a very slender figure, which is very hard if you don`t have the genetics to be that lean and it`s most of the times the reason why most of those 11 year olds will drop out as their body develops
I pretty much hate the use of the term benign in general. We really need to stop using it.
Why? There are actual benign conditions, you know.
@@LadyPashta because calling my extensive endometriosis that was causing severe debilitating pain "benign" is pretty darn minimizing. Normal people hear benign and think "harmless" "no big deal". It wasn't until a doctor said I had a very small chance of cancer that I started getting appointments asap where severe pain that was keeping me laying flat 22 hours a day and nearly constant unexplained vaginal bleeding and discharge was considered normal and no reason for urgency. Cancer isn't there only reason to give a shit about people's suffering. If I'd of had cancer I wouldn't have been fired but because I have something difficult and embarrassing to explain and diagnose my employer basically stopped believing me. Because it was something "benign".
@@FortheBudgies Wow, that seriously sucks. I'm so sorry you have to go through that...
@@LadyPashta thanks. Many people experience severe suffering from benign conditions. Is that really benign?
Bpc-157 can help this health condition
my daughter has hypermobility, PCOS, soft teeth, migraines, lipedemma, only recently have I heard of EDS, it seems likely she has it
My elbows are crazy.
My knees and one finger are especially crazy. People tell me that I am grossing them out!
Thought everyone could do that with there tongue
No
@@Catlily5 found that out lok
@@tomsale5142 I can't but my brother can.
@@Catlily5 do you have pain or central sentization
@@tomsale5142 Yes, pain but I don't what the other is.
31:36 I'M SORRY BUT THIS IS NOT ALWAYS THE CASE FOR HYPERMOBILE EHLERS-DANLOS SYNDROME PATIENTS!!! I'm 41 and the disease is present all over my body. It's present in tendons down my thighs and down my calves. It's present in my hands and in my feet. This is a mistake to say if you're older you should diagnose it as joint hEDS!!! Then again, the patient may not get the proper care they need from other doctors, because you tried to generalize it.
I cant wait until they start paying more attention to the overlaps between autism and hypermobility spectrum. Or even just each one of those in the detail they deserve. I would argue even those are the same disorder. Its neuromechanical developmental in nature. Proprioceptive disorders. Movement disorders. I have been saying for over a decade now, as a high functioning hypermobile autistic sufferer, they called most of this stuff mental when its actually more of a hidden movement disorder. The hypermobility made it impossible for then to even recognize the underlying dystonia of every muscle system, and some form of muscular Dystrophy. Functional or sympathetic paralyses, Autism might be a movement disorder more than anyone even realizes! You get parts that move or dont move differently, and this affects how the brain and our perceptions work! Wish they could even just pay attention to either one of these disorders on their own, but when you see the overlaps, it will blow your mind. Its appalling they have been so ignorant and rude to us
My head is so messed up from just being so confused about what to do with my shoulderblades for 3 decades. Amd thats just my shoulders. The main event is the hips and the bowel muscle that got stuck and made a crap ton of muscles all over my body stop working. That does terrible things to the brain!!!!! What the actual f**k?!?! If I knew that was a thing I could have said something about it. I didn't even have the sense to just say, my neck hurts too much, ever since age 5. Running always made my upperchest sore and the impacts to the back of my brain from every wrong footstep just normal walking adds up over decades. I'm high functioning and there's days where I'm questioning if I have dementia/parkinsons, bouts of confusion there is no adequate words to describe. Best I can do. It's all the motions ever experienced all packed into less than 1/10 of a second at any given moment. Hyoermobility is the ultimate mimic. It can mimic just about any other disorder in existence. Add some autism in the mix to make it even harder to describe things and distort the senses even further. I pretty much had to dissect and decode all the mechanisms I could identify over the past 2 decades to figure out how to translate how different symptoms present themselves in much different ways than what is considered common or normal. It's actually a real bear to deal with. I'm high functioning and I can barely work a job because theybleft me so co fused about some basic stuff they should be teaching by the 1st grade. If you wanna make someone sit in a classroom, the least you can do is make sure they can even sit right to begin with. If you want someone to write, make sure they can even hold the pen/cil the right way. These simple overlooked things screwed me uo to where I can barely work as an adult. Quit f***cking around!!!
I'm basically tracking this stuff and doing a lot of stuff that should be other people's jobs. And I don't even have a job!!!! Amd I'm overworked all the time even when I'm being lazy so you can f**k off if you wanna just talk smack and be a rude ignorant piece of crap. Just because I don't always sound like I know what I'm talking about doesn't mean i don't know what I'm talking about. I might just be having a mood or joint disturbance that takes up more brain function. Sometimes there just is no words at all. It just disturbing and disruptive and there isn't anywhere near the level of support needed for us to thrive. I know because I have chronic postural instability, there is rarely ever anywhere close to enough support anywhere, the brain included, it requires a whole different level of support. I have "mild" hypermobility and this is the stuff of nightmares!!!!!!! I get a taste of it all and it's enough to put me in the same camp as those with the way worse forms, because of all the difficulty it causes. I should be working with doctors, but not as just a patient!! Our system sucks for such advanced medicine and technology. What are we even doing????
There is no link or "overlap" of hEDS with autism. It is a coincidence you are seeing. Maybe because autistic people tend to use the internet a lot and therefore see things like EDS and WANT there to be a connection, so they comment on it.
EDS has nothing to do with autism.
I have autism + hEDS. The combination of the two has given me a lot of gut / food issues! 😐 Its a bad combination.
Dr Tinkle should have gone into urology, just saying. Sorry, I'll see myself out :) Thanks for this video.
I wonder how many thousands of times he’s heard this. Grow up.
There needs to be blood tests or gene tests. These are so inaccurate
For 85 or 90% of people who have Ehlers Danlos Syndrome they don't know which genes are causing the problem yet. So the doctors can only go off symptoms. The hyper mobility test is only part of the criteria.
Until they discover the problem genes involved this is how they diagnose it for the people who don't have known genes. I have never heard of a blood test.
You don't have to be hyper mobile or have stretchy skin to have EDS or another connective tissue disorder. One can have unstable or loose joints and soft, thin, fragile skin. He's a Dr and says "Pit-chures" and "hype-mobility"
I've got loose joints pain everyday think it's all if we have more anxiety no thin skin
loose joints mean the same thing as hypermobile he explains that at the start of the video, also i think all types of eds include hypermobile except for veds
@@dumbmusorowan yes and a strong fight or flight mechanism.trigger points in shoulders realy hurts what are the symptoms of other types eds not vascular.i have stretchy skin in certain areas elbows maybe palms.nit fragile though doesn't bruise easily though I twisted my knee twelve months ago slow to heal I suppose scar tissue
Yes the way he says "hype moabel" - it's hard to keep a straight face on.
Just because he has an accent doesn't mean that he is a bad doctor. I don't know if he is a good doctor or not but that isn't the way to tell.
Dr Tinkle? He should be a urologist.
How original
Ehlers is pronounced “Ellers”.
It's a German name so I can assure you that it's not pronounced Ellers. If it were it would be spelled as such. But it is not. The "h" signifies an elongated "e" sound.
@Mel Z that's right. I am german, so I have to know it. 😅
It is pronounced "A-lers", long A sound.
*its Jesus.
"Joint Hypermobility and It's Co-Morbidities" video. The word "IT"S" is a shortened form of "IT IS" or "IT WAS". No hyphen. Did you not learn proper grammar before getting your PHD? I stopped reading after that and questioned your credentials. Get a proof reader or go back to school and learn basic grammar.
Perhaps you may want to retract your statement and apply a little grace. The punctuation you call a hyphen is actually called an apostrophe. None of us are perfect.
Very informative. I had no idea about this , everything you have talked about i have had since i was a kid.
Especially the writing. No matter how hard i try i can't write good and its painful