Six Things about Hypermobile Ehlers Danlos Syndrome

[@SweetiePieTweety]

Hyper mobile but nothing is bothering them…. YET! When I was young I was hyper mobile and didn’t have much bothering me. But with puberty the bothers began and have progressed to many many many bothers. It’s developmental. Catching it early before bothers began and doing preventative would be such a new approach that could help many.

[@kkheflin3]

I agree. I read on the EDS website that the average age of diagnosis is 28. The sooner it can be detected the better!

[@womanatwellworshiptheFather]

Yes please. I was hypermobile and loved it. Just a bit clumsy, my feet fall to the floor like rubber bands when i walk and my ankles hurt so bad I cried at night, I threw up any time I couldn't figure out my center, no spinning, swings, car rides, amusement rides for me, but NOW. My fingers pop with excruciating pain. My hips pop, my feet can not tolerate being moved or pushed or the pain is awful on the TOPS of my feet. I have to shove my shoulders/collar bone back in the morning due to excruciating hand/arm pain that goes away an hour after I wake up. I used to BE VERY FLEXIBLE. ALWAYS could reach past my toes BUT NOW back pain and my hamstrings pop at the slightest aggravation. I stepped off a curb and they popped not ruptured though and I thought I was going to die. I drug my leg around braced for 2 weeks. If I step down the porch wrong my knee screams in pain one day, the next day it is the other. My mom has had extensive osteoarthritis and two hip replacements and needs a knee. Her teeth are all falling out rapidly. Its terrifying to see myself or my children going through that with no hope for a remedy? My sisters cuboid bone keeps popping out and she just popped her shoulder out at work. My sis already has had surgery on her ankle and her knee pops out alot... My mom was always taking supplements when I was younger so was my Aunt. I've followed suit. Anything to make us feel better. I'm the only one I know who complains of racing heart. I hate salt in food, my mom puts salt on bacon. I am having more and more problems with racing heart

[@kevinbissinger]

i think the main problem is not understanding that what you're feeling is pain and not normal because of how often your internal reality is denied and so you learn to just walk through it thinking everyone deals with it. I only learned people aren't normally exhausted and straineed by the act of sitting at 36 because I was working at a neurosurgeons and randomly decided to look at the checkin paperwork symptoms list

[@maryr7593]

​@@kkheflin3 many of us are 50 yrs old before we could get a diagnosis AND though we may have tried suggesting it yea🎉s earlier, it was dismissed by other drs. So only after being diagnosed with POTS did we get a referral to the specialist. For me I wasn't diagnosed with EDS but the sister diagnosis HSD (Hypermobile Spectrum Disorder) which means we have all the comorbidities but we couldn't bend certain joints in certain ways to meet the EDS criteria.

[@robetheridge6999]

Oh, my goodness, the "uhs" and "ums" were killing me.

[@denisecharles-uf5dk]

lol, it was triggering for me, but I managed to get through!

[@kimberlycoderoni6254]

💯. Very informative but hard to get through

[@mariannefung7993]

Yes, it appears that this groundbreaking doctor has some type of a speech impediment, like a stutter, for instance.

[@robetheridge6999]

@@mariannefung7993 nope, that's not a stutter; it is a guy who is unprepared and not adept at public speaking.În high school speech class, we would have failed the assignment.

[@maryr7593]

They could have gotten a better speaker but they probably wanted someone who was affiliated with the hospital. Some folks who see patients are not good public speakers and those are good public speakers are not good seeing patients. It is also difficult talking to your computer screen/vid recorder...in an office rather than in front of audience. I have word finding issues due to MCAS so I can relate. (Though I see this word finding issue with my elderly (in their 70s) relatives...at least there are 3 of them and when one can't think of the word, the others can usually get it.) Not knowing the age of the dr...this could be his issue. Despite knowing the words...they are always at the tip of your tongue...never available when I need them though.

[@kitten1122]

im tired of learning i just want to get better this syndrome has taken me life from me

[@SimiSilver]

Do you have a doctor to help you?

[@kitten1122]

@@SimiSilver doctors wont help us

[@SimiSilver]

@@kitten1122 The ones who can are few. Keep looking. Good luck.

[@tiffanylindfield9157]

Im so sorry😢

[@carmenilea822]

Very useful information! I got this diagnosis at 42 . I didn’t know why I have so many health problems. Doctors explained by EDS only the frequent subluxations, and tendinitis but didn’t find an answer for multiple allergies, food intolerance, POTS , neurological problems, IBS, gastrointestinal hemoragia and asthma. They believed I have an autoimmune condition that affects colagen . Thank you very much for this presentation, it is the most informative I have seen on this topic. Brilliant!❤

[@kkheflin3]

Very informative. Thank you! I have a student who has been diagnosed with hypermobile EDS and Dysautonomia. He is 15 and just was diagnosed in January/February 2021. From much of my research I have found that many people/doctors don't believe this is a "real" condition and assume a child (or adult) is "malingering." This child is in constant pain which the doctors don't seem to be able to deal with nor give the poor child any relief from the pain. This is a REAL condition and doctors need to be informed better about EDS.

[@ElizabethMillerTX]

Thanks so much for looking out for your student(s). Many of us with hEDS are overlooked as kids.

[@SerenityMellissa]

This warms my heart. I’m sure your students know how much you care about them beyond their studies.

[@taracooke1065]

Thank you so much for taking the time to learn. Most people don't.

[@Rls_0523]

It's incredible that you care enough to research your student's diagnosis! I was just diagnosed in the last couple of weeks, after 10 years of misdiagnosis and treatments, including 2 rounds of chemo. I just got referred to Mayo, and it's my last hope for any kind of relief and improvement of my qualify of life. I hope your student was put on the right treatment and he's enjoying his life now!

[@kkheflin3]

@@Rls_0523 How humbling. Thank you. I really feel teaching is not a job. Teaching is a calling. The more engagement I have with my students the more they learn. One cannot separate the child's academic health from their emotional and physical health IMO. Thank you for such a kind comment. I SO hope Mayo can help you. I live in Jacksonville, FL and one of the Mayo Clinics is here. Which one are you going to?

[@catH727]

I was almost diagnosed at 59, but didn’t have a diagnosed relative, so geneticist balked in diagnosing me. My daughter got diagnosed by her rheumatologist the next week. My rheumatologist same practice believes it’s only a problem in kids. Thank you for validating my life. I’ve had issues , headaches since I was 5-6 years old. I have 100 % of associated symptoms.

[@LeeLightfoot]

hi, check out my post above, this is definitely not as rare as suggested by the scientific community.

[@kkheflin3]

Also hypermobile EDS does not show up on a genetic test. It's basically a diagnosis of exclusion if the other forms of EDS are eliminated. Plus the Beighton Scale of course. One would think he would have wanted to rule out the other forms which ARE genetic!

[@AlexMint]

@@kkheflin3 one thing that frustrates me about the beighton scale is a lot of people are what you would consider to be generally hypermobile, but they fail the beighton scale. Because the beighton scale is a sampling, some doctors don't consider the general system because the diagnostic criteria don't care if someone is a 4/9 but has loosey goosey shoulders and fingers.

[@kkheflin3]

@@AlexMint Yes I have heard this before. It's really a shame they don't have a more exact measurement for hEDS. I have friends who were cheerleaders in the 1970's (and we are old now) and they ALL are what I would call "hypermobile" yet none of them have hEDS. I think there are far more cases of hEDS in this country but doctors just don't diagnose it because they miss it.

[@AlexMint]

@@kkheflin3 Yeah, it took some re-evaluations to get a diagnosis because they bodged my POTS test for example.

[@hanlore13]

As he said that things snap, crackle, and pop my foot started singing the songs of its people

[@greenlightgoddess7359]

I always called myself a rice crispy

[@concertmasterntl]

Nothing has ever described my life better than this video 😯

[@Bellasagegardens]

I really appreciate the statement that says they have severe symptoms but look fine. Despite having a diagnosis and many debilitating comorbid complexities, is still get the written comment that goes similar to the following," patient complains of xyz , i suspect this is due to her diagnosis but the issue is mild." Haven't been able to work since 2010 ,yet was denied disability and appeals because my records all say, " not severe".

[@pwyo6203]

I’m sorry your Dr isn’t hearing you. If that office uses a portal system for communicating, you could message your Dr with symptoms as they affect you. Those messages build a more descriptive & accurate picture of your daily life. In Michigan, those messages also become part of your medical record too.

[@bethanyaslinger9103]

Just wanted to say THANK YOU for sharing this presentation. I was diagnosed with GERD years ago, which was followed by Idiopathic Hypersomnia in the past year. On top of identifying my ADHD and suspected Autism, I am also increasingly dealing with bodily pain in my joints and slowly the algorithm recommended EDS criteria. I have had rough experiences in the past with healthcare, but I am hoping to work with my primary care physician to diagnose me so I can have work protections when I have especially challenging symptomatic periods. Being diagnosed for treatment is ideal, but work environments can be hostile for people with hidden disabilities. I just want to be able to function and feel safe from losing my job.

[@melissafarrugia9531]

I feel you. It’s not easy looking quite normal but feeling horrendous. The want to be somewhat “normal” pushes us so much yet, we get so fatigued and crook that it is difficult to perceive long full time employment and we really have so much to offer . The lost potential is very sobering and if we can find a way to utilise it without the physical pressures we surely will feel much better. Much love to You

[@samf8405]

This was so informative, and it feels so nice seeing people with stories so similar to my own in the comments. Some of my earliest memories are of me complaining of back pain and my grandmother telling me I was too young. Only my mom ever believed me. My mom has since been diagnosed with fibro, and we are investigating EDS for the both of us. It has been so hard navigating the world not knowing. My mom destroyed her back at a previous job from lifting something heavy and twisting. I am still dealing with ongoing neck issues just from one wrong move while working retail almost a year ago now. And those pains are on top of all the other aches, pains, crackles, and pops. I'm so thankful to live in a time where we can do this sort of research when doctors refuse to take us seriously.

[@neyisek6928]

Extremely long time from onset puberty to diagnosis at 42. Also very frustrating and fruitless going dr to dr trying to find some one to help . Feel I am failing my daughter who presents differently than I do. More subluxations, slipping ribs too. Lots of pain. How can doctors not know more about EDS? How come they aren't curious & interesting about things they don't know about to learn & help ?

[@kkheflin3]

Excellent questions. My research says doctors aren't taught anything about EDS in medical school at all. I do NOT understand how this could be. You aren't failing your daughter. You are doing everything I'm sure in your power to find a program/medication etc for her. It's not easy but you are TRYING. You don't have to climb the whole staircase. But you have to keep taking each step. Good luck to you.

[@WVgirl1959]

I was always achy as a child especially after playing and my legs would hurt terribly. But doctors just told us that it was growing pains. Even when I described how when I would try to run "the band would come loose in my ankle and catch on another bone and make me fall", they had no clue that I had lax muscles although they would say I had weak ankles.

[@kkheflin3]

How awful for you. Not being "heard" by doctors is so frustrating! They may "listen" but often they don't "hear" where their patients are coming from. This illness needs far more publicity than it receives.

[@kadoosingh5010]

Can relate!

[@AlexMint]

Yeah they basically did the same thing for me, though I also had dislocations of feet joints that prevented me from jumping or standing on my toes.

[@kkheflin3]

@@AlexMint There are many doctors who act as if being hypermobile is some kind of "party trick." They don't even understand collagen? Or the lack of it?

[@AlexMint]

@@kkheflin3 Yeah, like "have you just tried taking collagen supplements" like as if they didn't spend half a year learning about how nutrients are digested.

[@SLJ1943]

I’ve experienced most of these symptoms. Most doctors are clueless. And the symptoms go way back to perhaps around four years old. And that was a very long time ago.

[@AlexMint]

I've met a lot of other EDSers whose pain is managed well with medical marijuana, but getting a medical card is often borderline impossible because a lot of doctors just don't "believe in it" and EDSers get labeled as drug seekers even though we explicitly say we don't want opioids.

[@julieshenk7640]

I wanted to try LDN. Provider said no as too experimental.

[@AlexMint]

@@julieshenk7640 love how what's "experimental" in the US is often standard operating procedure elsewhere, just as a way to justify not paying for it.

[@ragebiscuit]

That’s why I started smoking at 21, for pain. The car accident around that time exposed my “forward neck” spinal condition but my severely excessive recovery time didn’t seem to alarm anyone (way back in 2009) so after 6 months taking tramadol I switched to cannabis and been smoking ever since as needed for my pain and nausea. Only 14 years later do I now have the slightest idea why I’ve been in pain everyday since my 20s. Best of luck to all of us!

[@timestax]

Get your MM card from a doctor that only prescribes MM. If you have a diagnosis that that is on the list of diseases or conditions you can get a prescription. It's expensive but if you have the money it's worth it to try. If you are anywhere near the Cincinnati area, Dr. Contractor is wonderful if you have neurological problems that can accompany EDS. She is in private practice though and won't fill out insurance paperwork for you. You can submit claims to your insurance company and they may or maynot pay.

[@timestax]

I have used MM and none of my doctors, except one had a problem with it. Since then, unless I am having surgery I don't tell them.

[@Hansen23900]

Go for prolotherapy before fusion of cervical bones! It stabilizes the ligaments needed and can last for years. Fusion should be the last resort

[@Misslou2425]

Is this even covered by insurance? I just learned about it and it looks as if it isn't covered at all and is completely out of pocket at thousands per injection?

[@micheled6111]

Always wondered about degenerative disc disease since I and three brothers have all had herniated discs and disability from that at young ages. Now when I hear about a spectrum and incomplete penetrance…my daughter has hEDS and all the associated syndromes described today. Very good explanations. First torn meniscus from getting into bed makes a lot of sense now…then not so much. Great lecture!

[@katreilly3094]

Finally being tested soon I'm 23 and after being ignored for almost ten years I don't know how to feel now

[@AlexMint]

EDSers also seem to get more cases of vein issues like fistulae, with a lot of doctors who could address such a thing straight up not knowing how to deal with EDS patients, resulting in a two-operation procedure being extended out further if not making the issue worse.

[@digitaldame2672]

Im 53 and can still touch the floor with my hands flat. I always bent my thumbs to my wrists as a joke, my skin is able to be pulled out like elastic and it remains soft and puffy. I would freak kids out at school by clasping my arms behind my back and bringing them forward hehe. Cant do that now. I have no wrinkles and look younger than I am. Genetically we have in our family Muscular Dystrophy and know I have MDS. I live in the outback and doctors just don't have skills to help me. At 19 I ruptured discs in my back and it has been chronic pain since - from Army training. The pain never left. I pop my own back, I know what to do. My left shoulder dislocates alot and if I dont watch my knees they pop out all the time. I have hyper huge calves part of the MDS. My disc was L4 L5 joint disfunction. I have issues with my left thoracic. My eyes droop. I just need a pill to swallow now. Burn me and spread me in the ocean.

[@lindseym3810]

Thank you for bringing awareness and making a positive difference. Great information.

[@gillifish]

I have EDS and getting tested for mastocytosis and mast cell problems soon. I’m so upset everything still goes overlooked

[@shannongreenwell1278]

My Neurologist is the one who diagnosed me with EDS. I have Classical type two

[@justinmcelheny9962]

this is so spot on. thank you!

[@2stansfield903]

I think I was sent to a rheumatologist to shut me up so they could again say its stress however within 10 mins he knew it was heds .

[@sharonmccauley4134]

Dr. Trevino in Clearwater Florida is a specialist and does virtual appointments. 🍀😇

[@lindasplaylist100]

Excellent lecture

[@danadecore6872]

That was amazing thank you for all the details. This is spot on!

[@2stansfield903]

Thank you I'm 60 and got a diagnosis of eds .been ignored for years.drs just treat all these symptoms as individual things .it's looking like pots which I think the Dr's think I am .hope I'm going to get the extra test and support I need cause iv not been looked After just turned away with more tablets.

[@MsBlondable]

The acute porphyria is also run with Erlers-Danlos syndrome. There seems to be so many patients that have both one of the acute porphyrus and also Erlers-Danlos. This needs to be studied.

[@heatherprock8205]

Very helpful

[@julieshenk7640]

Though OA, FM, Hashimotos, Celiac, and probable meneires and Sjogrens, too, Fuch's and Dupuytren's, too prior...the diagnosis of H-EDS did finally come at age 68. The pieces of my life appear to fix. So many overlap but since bracing helps, know my ligaments are like string.

[@womanatwellworshiptheFather]

The fight or flight used to make me feel so strong but now it wears me out. I cant breathe after large meals and i fall to the floor because my legs get weak.

[@jomartin6209]

Thank you I may have this

[@jnanashakti6036]

Has anyone ever considered an environmental/chemical cause? Something we come in contact with that triggers a malfunction in collagen production on an epigenetic level?

[@karencarney7595]

Tenascin X deficiency . I find it odd that Consumption bk in the day (vita C deficiency) caused thr same exact symptoms. Mega doses of Vita C complex apparently help alot. Plus the Cusack Protocol. We are highly sensitive to food and environment bc connective tissue is responsible as a network of information pertaining to mood, pain and sleep.

[@MyBeautifulHealth]

@Karen what about the oxalates that accompany large doses of vitamin C?

[@Truerealism747]

​@@MyBeautifulHealthjust depends if you can remove oxaltes some of us can

[@Truerealism747]

​@@karencarney7595my grandfather told me I was different this is why we mist if us have Asperger's collegen in the brain stem my grandfather never drove etc grew only out if garden only home made soap no pain all his life he said we're prone to stress his mother died brain tumor my uncle to Hodgkin's and just list my mum to severe ms I wondering if it's safe for us to use a mobile etc

[@Truerealism747]

I can go back to 1825 all hypermobile all have Asperger's environment was cleaner then in some ways radiation but maybe not in pot furnaces

[@felipegross]

Thanks for the great content! I just wish it was easier to find it among the "uhms"...

[@PMC889]

i imagine the ums as rungs on a ladder and think about how smart this guy is and how he is trying to put his big brain into regular words for us ❤

[@peachespulaski5981]

I was sent to a rheum and the dummy told me she couldn't help me if my joints weren't hot and swollen

[@jillsauder8340]

Where could I get a copy of the powerpoint stack in this video? It would be so helpful to me!

[@mandyrobbins2160]

Everything about H-EDS fits me, but I can't get a doctor to diagnose me. How am I supposed to get proper treatment without a diagnosis, and why aren't more doctors educated about this?

[@paigeelizabeth3903]

Go to the Ehlers Danlos society website and print out the diagnostic criteria for your doctor, and ask to go through it at your next appointment. I wish you so much luck in the journey towards diagnosis!

[@half-pintasmr1075]

There is no treatment for H-EDS. You'll just get a diagnosis.

[@claire5399]

@@half-pintasmr1075 prevention. PT, pain management, control of complex associations like Mast cell activation disorder, . I realize there are unfortunately very few physicians to help us.

[@Rls_0523]

@@half-pintasmr1075 (if you were diagnosed) -- did your medications change any? Like I'm hoping they'll at least give me something that'll give me a little quality off life back, like being able to load a dishwasher, at least. I'm anxious to find out if they'll take it more seriously now and do something, anything, to improve my quality of life. Thanks! I hope you're doing well.

[@kkheflin3]

I would suggest going to the Ehlers-Danlos Foundation website. They have some great information for patients AND doctors.

[@kevinbissinger]

12:34 I would bet my life savings that this is more to do with the socialization of men and women. Women are allowed to talk about how they feel, men are taught that life is pain and to suck it up and deal with it. Men generally don't seek medical treatment unless it's life threatening, and chronic pain is not life threatening. That, plus the overall lack of social support amongst men means nobody is paying attention to their health from the outside either(unless you want to talk about how almost all medical research is done on men and assumes women are the same). The only reason I'm still alive is because I've had girlfriends who paid attention and PUSHED HARD for me to see a doctor. I had lots of stuff going on for example I would have died from colon cancer in like one more year had I not been forced by my loved one to get a colonoscopy when I did. I just worked through the 9/10 pain days because that's what you do when you're a man. You produce and provide. edit: I'm 37

[@kadoosingh5010]

This was super interesting. Are you aware of EDS affecting bone FRACTURES/bone density?

[@b_uppy]

Think whether you hit on your heel or toes also has an influence.

[@Mammy-dh4dn]

Great video and please don’t think i am being horrible but i almost threw my phone because of the amount of “um um ums” 😡😡😡😡

[@jenniferspeas601]

I know. I don’t think he can help it, so no criticism in that way, but a bit of editing or muting could make a world of difference! I’m grateful that he’s spent his career in studying medicine and treating people, rather than perfecting his public speaking skills, but again, muting the stammering might save some sanity for listeners!

[@melissafarrugia9531]

I’m going to back you all because He’s amazing but the ums and arhs just aren’t conducive to listening to this. It’s really such important information and it would really help if it was presented by a speaker who’s not going to loose us because there’s a zillion ums

[@menow3175]

Yup. Things bleed. Unless you have Factor v leiden and 4g/5g. Then things F up. I also believe it's not just local anaesthesia, it's cocaine and all it's derivatives, the connection between coke and connective tissue is lurking in studies since the 80s, yet no one knows anything. Great video, thank you for raising awareness

[@kevinbissinger]

That's nuts! I was a hardcore druggie in my early 20s and cocaine was just meh. One of the only drugs I only tried once. Crazy to think there's a connection!

[@OptimisticAutistic]

Him saying its common - why have i been assuming the med community is right in saying it’s super rare?

[@MsMesem]

Just not diagnosed... very common.

[@LuccaRPG]

I strongly suspect I have EDS of some form. I've had dislocations and hyperflexible joints pretty much my whole life. I meet almost all the markers (I suspect I would meet them all if my spine wasn't entirely fused and my elbows werren't dislocated from birth). I never considered mast cell activation as a symptom but I hit all of the gastrointestinal markers. Intresting. Purberty was the worst. Everything dislocated. Even my hip which I needed surgical intervention for. I'm now middle aged and currently in my 'you have early onset osteoarthritis and you're achy all the time! Oh, and here's another disolcation for you. Congratulations!" part of my life. It's...not fun.

[@LeeLightfoot]

On statistical incidence, here is an anecdotal (n of 1 for me but a broader net containing non kin) observation: Apart from my own family, my oldest friend of 45 years (born less than 300 feet from myself geographically) also has EDS conditions and more recently a niece born with severe hypermobility. An artist I communicate with in a very small niche of the industry has debilitating, diagnosed EDS that radically impacted his career. Additionally, another female I know, non relative, has EDS. On probabilities, either myself and my wife were very unlucky (add the above), or we had a good probability of meeting another person with particular collagen mutations. My children do not have the severity (so far) of my childhood manifestations of EDS but do have greater joint hypermobility than my less severe elbow/ knee joint presentations. Again on "poor luck", various EDS presentations can be found on both my mother's and father's sides, most recently with her brother in hospital and a note from specialists that the same heart valve issue his son had is genetic. On top of this, talk from doctors (who I believe know nothing of EDS) on a genetic possibility on my mother's high cholesterol (added to her spondiltis, UC and reflux, to name a few).

[@womanatwellworshiptheFather]

I was hospitalised because when i was 14 i threw up everything. They couldnt figure out what was wrong. I stayed in the hospital for weeks. No explanation. I get the high heart rate/dizzy feeling from squatting down to standing. I also get very weak after meals. An electrolyte chew helps me so much too. My skin is painful with compression hose.

[@melissawyder6477]

As a child was I clumsy? Heck yes

[@womanatwellworshiptheFather]

I have very very heavy periods and i have awful nausea/vomiting/dizziness episodes around my period. I know its anemia but iron makes me so sick. I have to have more lidocaine and so do all 3 of my sons. Its definitely genetic.

[@keawarren]

Late to this comment but I have both EDS and anemia. My doctor put me on time released iron pills (filled by a pharmacy, not over the counter) because the initial iron pills made me ill. Might be an option for you.

[@Truerealism747]

​@@keawarrendoes anemia cause pain in eds obvously not same as woman with eds

[@keawarren]

@@Truerealism747 I haven't experienced pain from the amenities but rather tiredness.

[@Truerealism747]

@@keawarren had that since birth infact I slept 23 hrs a day as a child.d ribbose helps me with that

[@PMC889]

Floradix Iron and Herbs is a great supplement that isnt like the iron pills and works VERY QUICKLY. still take it with food.

[@terriwaddell2915]

who do you recommend in Cincinnati to treat someone with EDS? having a challenging time trying to find someone.

[@lyndsaywebb9962]

Hi, I would love to have a copy of this presentation if available.

[@dumbmusorowan]

54:20 just want to say that i've heard lots of heds people complain about their joint laxity getting worse on birth control with progesterone (which is any type really but especially the progestin-only types). i'm not a doctor just a patient, and this is mostly from word of mouth, but there are some studies and articles about joint laxity and birth control. just not much about eds patients specifically.

[@womanatwellworshiptheFather]

My 9 year gets an asthma like cough when he gets overly excited. I have to tell him to calm down. It is not constant and it goes away but i dont know other kids who do this.

[@keezjordan1619]

Don't let your knees go backwards when you sleep. The weight from blankets. This cuts off circulation and will enlarge your heart.

[@spikeybunny6577]

As a child was I clumsy? Bwa ha ha! I’ve always been the family klutz! Super bendy and gobs of problems… too bad they’ve only so far classified me as Benign Hypermobility. Never mind my lengthy list of comorbidities. Sadly, I’m already on the fusion train. My neck & low back… so many fusions

[@b_uppy]

Bet a lot of EDS patients have a some fear of heighths, because of balance issues. He keeps saying 'recumbent bike' for exercise, bending can be a problem for EDS patients, because of arthritis...

[@womanatwellworshiptheFather]

I cant even go near a window that is high up because I start to feel "wavy". When I was younger I thought it was something about windows

[@b_uppy]

@@womanatwellworshiptheFather Me too.

[@Catlily5]

The recumbent bike helps me. But sometimes I need help getting down and especially up from it.

[@b_uppy]

@@Catlily5 That sounds like fun.

[@Catlily5]

@@b_uppy It can be.

[@MsDiesel2006]

Is there a correlation with ITP and EDS??

[@kkheflin3]

Vascular type Ehlers-Danlos syndrome is associated with platelet dysfunction and low vitamin D serum concentration so the partial answer is "yes". It is NOT connected to hypermobile EDS which is what this doctor is discussing in the video. There are 13 different types of EDS. (To the best of my knowledge, there may be more now). All of them EXCEPT hypermobile EDS can be picked up on a genetic test. This is very unfortunate and very discouraging for those with hEDS. To find out for sure you would need a genetic test.

[@timestax]

I hope there isn't. My grandson bas been hospitalized twice for ITP. His mother had severe EDS. He also has severe autism. I have always wondered if women with EDS are more likely to have children with autism.

[@melissafarrugia9531]

@@kkheflin3guess what 😊 Gene found that is a marker for hEDS last year, hasn’t been announced which one it is but the students and interns working on EDS have had a breakthrough and the reason it took so long is because it’s not a collagen gene, so it wasn’t easy to detect it. HalleluYah!

[@kkheflin3]

@@melissafarrugia9531 Indeed! I so hope this will help with diagnosis so they will all quit expecting "conversion disorder" which seems to be the "go to" for many of these doctors. Right now a disturbing case going on here in Florida (Maya Kowalski) where a young girl had CRPS and the mother was accused of "Munchausen by Proxy" and ended up taking her own life. People are dying because these doctors won't educate themselves and be willing to learn about the hidden illnesses which are hard to diagnose. They all have a "god complex" and think they know everything. They don't.

[@oliverbird6914]

I just want treatment

[@tknzdworldfirstidentylinke6404]

What is this doctors name?

[@cnpf312]

Thomas Coyle

[@Misslou2425]

It seems you are in Ohio. Do you have offices statewide? This video has summarily encompassed my entire life of medical misery, multiple dead end diagnoses with nothing in the way of a cure to show for it. I desperately need help!!!! Please....where can l contact you?

[@isashisha]

why do people always just says POTS instead of Dysautonomia??? POTS is only one syndrome of dysautonomia. There are others that affect the heart just as much, if not, more. Yet, whenever people talk about dysauto, they ONLY mention POTS.

[@tknzdworldfirstidentylinke6404]

What kind of doctor can give me a diagnosis?

[@kitten1122]

one that's willing. its extremely hard and then they will use it as a reason to deny every test and treatment available. its a death sentence

[@katiea.7356]

It depends. My electrophysiologist diagnosed me because I ended up manifesting POTS and he knew that they often coincided. I had always had hEDS but never self diagnosed though I was suspicious I had it.

[@jayzee2000]

Neurologist

[@popeyethepiratepug3000]

Rheumotologist. Or even geneticist. Myself and kids are being referred to rheumatologists

[@mjgates3759]

There are people who have systemic mastocytosis and hEDS. Never say never.

[@womanatwellworshiptheFather]

Thank you. I suspect my family has been dealing with hypermobile disorders, the males have more vascular problems, the females the joint problems. My 9 year old is very clumsy and falls alot, he can turn his hip joints 180 degrees. Im very clumsy, no sense of direction and walk into stuff constantly. My fingers pop all the time and so does my thumb. My hips pop alot too. My Aunt had so much joint degeneration and pain in her hands everybody just thought she was hypochondriac. Her last post on face book was about not being able to breathe. She died the next day. Also i have horrible arm/hand pain in mornings from what i suspect is thoracic outlet syndrome

[@timestax]

I'm very sorry about your aunt. I believe my DIL died from EDS complications 2 months ago. She was only 38. Is your brother real tall. He might have Marfans disease. Men often have Marfans when female family members have EDS.

[@Truerealism747]

​@@timestaxhaving an heart echo this week at 43 ime tall Brighton score fully.dint have ling fingers fybromyalgia pain worst or neurologist migraine in the body I've had pots CFS 26 years but pain worst

[@michaelkavanagh5947]

Mast cells are weak too. That's the problem.

[@cathylynnklahre4748]

I have my body do this..asborbe in my brain even it's strange .. I need help 😫

[@melissafarrugia9531]

Please try not to say uh just breathe in and go on it’s much easier to listen to 😊 no disrespect meant and thankful for the discussion

[@jennaalletag1637]

@33:15