Ehlers-Danlos Syndrome: “It Hit Like a Tornado”
HTML-код
- Опубликовано: 21 авг 2024
- Patricia Weltin of Beyond the Diagnosis talks about Elhers-Danlos syndrome, a rare disease that afflicts two of her daughters.
Ehlers-Danlos syndrome is a group of connective tissue disorders. There are various forms of Ehlers-Danlos. According to the NIH, there are numerous types of Ehlers-Danlos syndrome had been described and to date, over 19 genes have been associated with this disease. Most of those genes (COL1A1, COL1A2, COL3A1, COL5A1, COL5A2, ADAMTS2, FKBP14, PLOD1, and TNXB) are linked directly or indirectly to collagen production.
A common symptom in most people with Ehlers-Danlos syndrome is an unusually large range of joint movement (hypermobility). While often viewed as an interesting school yard trick, the loose joints are unstable and prone to dislocation and chronic pain.
Many people with the Ehlers-Danlos syndrome also have soft, velvety skin that is elastic and fragile. Organ damage and bone abnormalities can also be observed in these patients.
As Weltin explains in this video, her daughters grew up relatively normal but as soon as puberty began, aches, pains, and joint dislocations became more commonplace.
As someone with EDS and hypermobility here is a warning IF YOU LIKE TO SHOW OFF YOUR HYPERMOBILITY DO NOT DO THAT YOUR BODY WIL BE DESTROYED
For REAL! When I was in preschool, I would always dislocate my shoulder to freak out my friends and teachers. Now, it's my biggest problem joint and prevents me from driving anywhere longer than an hour and a half (and that's a stretch sometimes)
Thank you for explaining how they grew up generally healthy and then later the pain and other symptoms began to manifest seemingly out of nowhere. I actually only now realise that I indeed had many subtle signs growing up. However, the severe unrelenting pain and other more serious issues didn't begin until adulthood.
Same. 🫂
Same friend. 🫂
this
Me to I believe it's larger amagdalia doing this more stress as we grow up
Do you have liver disease as well? I was diagnosed this winter. No one's really cared to explain it to me 😞 but I definitely know now pots is why I live in my bathroom hidden away from hitting the floor constantly, don't want my step son to think I'm a drug addict. Everyone else does though. "Just lose weight just be thankful you have a 2 year old that you didn't get to bond with after the C-section unmanaged pain screaming for help and nurses laughing at you while you couldn't get to the NICU for 24 hours because it felt like your skin was tearing and organs were being stabbed" "it's all in your mind, meditation helps" fuck
It’s like my body is already tearing itself apart trying to stay together. So what helps is doing literally everything lightly and relaxed as I can.
Yes absolutely
I didn't realize that a lot of my pains and other symptoms were abnormal until my early 40's. People around me engage in comparative suffering so when I would mention pain, the "listener" would reply with their one up issue. Example: "My pain is much worse." It led me to believe that my experiences were normal.
Yes!
This is my life! You assume everyone feels this bad!
That was me too. I thought everyone had joint and muscle pain and even now I can't get doctors to listen. I am positive I have HSD or hEDS but at 55 the doctors right it off as arthritis. I do not know of a single older person with arthritis that is anywhere as flexible as I still am. Completely frustrated trying to get a diagnosis for what is going on and no one in the medical field wants to listen. In MN and no way to travel. anyone reading this that knows a doctor in the twin city area with experience with hEDS please let me know who that doctor is.
Logan Skiwyse Would it make you feel better to know that Before I was even a teen, the best diagnosis they could muster was...
Arthritis! 🛎🎊
Juvenile arthritis. 👨⚕️🤷🏼♂️
🤦🏽♀️
Only one Dr recognized it, after I was in an accident he said I shouldn't have survived. Though he wouldn't record it for fear of the preexisting condition killing any chance at insurance coverage later. So I went on with everyone clueless, thinking I was just a lazy complainer. 🤕
@@010101Be currently, that's the best I have gotten as well. Arthritis. 57 now.. yaaa, and it's all too easy for them to write it off that way. Trying to get a appointment with a clinic that might be able to give me a better answer. Still open to it not being hEDS but... given the totality of information I have collected and my symptoms I wouldn't bet on anything else.
But hey, took 55 years to find out I had autism, adhd and ptsd.. so what's a few more decades to find out the rest.
What a wonderful, supportive and smart mother you are. I am 45, almost bed bound with pain and there is absolutely no help for EDS patients where I live. It's a living hell, living each day as though you've had a nasty accident. There is never any reprieve, any respite.
all I can do is say I know what you are going through. I have been going through it for 13 years longer. I wish I could tell you it gets better but I don't want to mislead you like doctors do. take anything you can for the pain and don't think that you have to appologise for it. you don't. you have been dealt a crappy hand as the rest of us EDS suffers have and all we can do is the best we can do under the circumstances. use cannabis or oxy or whatever to make your life more livable and forget what anyone else says about you not looking like you have a problem. they have no clue and they are useless if they can't understand. you have to be your own doctor because most doctors are pathetic. I said that I think my joints are loose and the doctors laughed at me. a few years later in 1990 I went to a genetics clinic and they did all the tests and told me that I am hypermobility, translation-loose joints. the doctors laughed at me but I was right all along. they didn't know it was EDS back then but ever since I was able to get the meds for pain without a horse and pony show for them. doctors would do all kinds of stuff to test my joints and now we know not to do it because it makes it worse but they were doing it to us and making us worse, making the pain worse. I would be in so much more pain after seeing a doctor for 2 weeks to a month just because they did their little test. as I sit here my right hip is killing me. keep pressing on. there are many of us and we can talk to each other and be a support of some sort at least. just remember, this is not all in your head no matter what anyone says. do whatever you need to to make life better. you deserve it. have a great day. One thing that really helps me is having a relationship with my Lord Jesus Christ. He is why I am still alive today and have not killed myself. He let me know He is real and has been a help ever since. I hope you are feeling better today. knowing that I am not only one helps. sorry for going on and on but even that is helpful. take care and have some relief anyway you can. blessings.
Caroline McIlwraith Hi, I’m sorry to hear that there is little help in your area and that you are suffering so much. Have you heard of Jeannie Di Bon. She’s a movement therapist who runs an exercise program for edsers. Her program is called The Zebra Club and she also has a youtube channel under Jeannie Di Bon. I find her to be extremely helpful in helping me mitigate pain. And you don’t need to leave your home or bed.
@@dmerojas - Thank for sharing the info. I'll check it out. It's a terrible situation and each person is different so it's best to leave no stone unturned in hopes of finding the right combo of management techniques for each individual. Exercise, when done wrong for an EDS afflicted person (a Zebra) makes EDS worse. In many cases the damages are progressive and accumulative.
One of the first things most Non-EDS savvy Docs will do is say "Exercise will help" bc they dont know the hard data. That's a total assumption. They are un-aware that conventional exercises are intollerable and will cause further, irreversible damage.
It's also very sad that not enough Physical Therapists (PT) know the correct info. Much more training snd therapies and specialist are severly needed (asap).
I’m so sorry. 😔
I am 34 and diagnosed 2 years ago and the pain for me has started ramping up, it’s mainly triggered by the cold I find
Thank you for addressing how much it can vary in age, body, hormones, it’s so true and I thought I was experiencing something else but no it’s all to do with Eds!
@Blue Skies i dont mind at all!
@@veritasgodesshuh (?)
Parents : PLEASE believe your kids are in Serious pain when they say they are, and Fight for their treatment for pain when that day comes. 😥 There is an undertreatment problem in the United States but if and when it becomes critical or intractable pain disease they are going to need someone to treat them, but it starts with us fighting and advocating for our sick loved ones!
I agree 100%!! My twins are now 23 yrs old and need advocacy more than ever! I’m trying to figure out how to help when the next ER trip or crash happens. I’ve got it too so I write everything down & look for videos/study what my Son says is happening. I adore my kids & wish I could do more 😟☹️
The snow blindness she is talking about towards the end is called “visual snow”
It's interesting how you mentioned Chiari Malformation and Syringomyelia bc my mom found out she had both nearly 20 years ago and 2 years ago at a routine checkup a doctor took a couple of looks at me and asked me if I was flexible, I did the thumb and pinky bend thing and showed her that my skin was stretchy and told her about me feeling like I'm going to pass out often from standing up , achy joints, constant tiredness and constant sniffles. She mentioned EDS and it's actually helping connect my families genetic disorders.
Can you go into detail about how it is helping you connect your family's genetic disorders? I am wondering what my family and I are at risk for. Wondering where you are because I want to go to that doctor! He was cool enough to also diagnose you... most of them can't figure out a rare disease in the first place let alone diagnose a family member
I just want you to know, Patricia, that you're a hero of a Mom, finding out all you did for your daughters to be correctly diagnosed and live the best possible life.
You no doubt saved them years of the psychological and physical suffering and lost youth that comes with the many misdiagnoses for EDS.
I have Hypermobile EDS and have also suffered from the "snow blindness" your daughter has had, so thank you for bringing it up. I knew it wasn't normal and it bothered me so much! It seems to be related to pain, or my head, or jaw or and/or spine in my opinion.
The more we raise awareness about these adjoining disorders, the more hope of being taken seriously and finding a cure we can have.
Just wanted to leave a comment to express my appreciation for your video and your advocacy for your daughters.
God bless you and your family, and let's hope for a cure.
Hello 🥰 just popping on to say hi and let you know that I set up my RUclips channel to raise awareness for EDS and other chronic illnesses that I have ! Just uploaded my first video 🥰 if you felt like checking it out and maybe subscribing that would honestly mean the world 🥰🥰🥰xx
I am 40 and I have been doing a lot of sports and I was pretty good at them. Pain started when I was a child and now it is unbearable, most doctors are hopeless, arrogant arseholes. If they can't find anything they usually say things like, "it is all in your head", "it must me depression", "it is related to mental healt" of course we'd be depressed to deal with the medical people like them and feel like a hypochondriac. They need to be more educated with EDS, ADHD and Autism. The people who live with a condition, usually do know more than most medical bigots.
make sure they don't do anything but build up muscles as fast as possible and stay muscular which is the only thing that has helped me to get through it. I am 58 now and have had EDS for 44 years. buidling muscles kept me out of a wheel chair. it doesn't get any better as you age and doctors, most of them, are useless. totally useless. they have no clue what they are doing. if anything most doctors have made my condition worse.
Dealing with doctors has been an absolute nightmare. I really don’t have the words for it, or how it’s affected me.
@@fromthefire4176 Like I said, most doctors have no clue and a lot of them have no compassion or care to be honest. they think they know what is best for you and a lot of the time they caused me unnecessary pain just because they followed their typical
procedures but those procedures are not good for people with EDS but they don't know and if you say anything they will make fun of you just because they are doctors. I have learned that that doesn't mean very much these days as most of them are worthless like I said. I hope you find the solution to your condition and how to make life better for yourself. It is you who has to do it. for me it is pain management and if I can getting the body as conditioned as possible to help stabilize the joints. that is the key to controlling EDS. Wishing you all the wisdom in the world in as you strive to live with this condition.
Can muscles stop you from dislocations?
@@Catlily5 my doctors seemed to think that they can and I feel that the more muscular I got the more stable my joints were. my hips didn't hurt so much and were not so easily popped out as well as my shoulders. I haven't been able to work out because of a devastating accident that almost took my life and now I am in a lot more pain because my muscles are fading and my joints are not as stable as a result. so yes it is my experience that they did support my joints and keep the stable and from popping out. I would use the power bands and things like that, you do get a good workout from them and they do not hurt your joints as much as free weights do.
@@kusnezoff8705 That is good to know. My mom gave me some of those bands. I am lucky because I build muscle easily.
Same. Just now putting the pieces together at age 48 after years of knowing doctors must be missing something. Now I’m watching for things with my children. Thanks for sharing!
It’s all coming together for me. I’ve had a very mild form of it. Very mobile joints, double jointed, I dislocate my hips every time I make love, I have a very mild form of POTS, scoliosis, frequent UTIs, i used to be the most flexible in my PE class-reaching all the way past the end of the scale, now I’m in awful pain between my shoulder blades and my ribs sublocated during pregnancy. I couldn’t get off the floor during my last pregnancy because my joints weren’t able to move! I’m just glad I can at least figure this out after al these years. I don’t have it that bad thank goodness but it’s all coming together. God bless everyone
@Blue Skies yes we can talk. How do we do this without publishing our personal phone numbers...l
@Blue Skies I’m actually feeling ok. I’m just relieved that my symptoms match Ehlers Danlos. I was completely confused for years about this.
Do you get that pain between your shoulder blades constantly or just from lying down and after sleeping?
Don’t have any more kids. I wouldn’t wish EDS on my worst enemy.
everything I wish my parent did, minus the help part. I made my first video of how my rotary joints, eds, or marphans has and continues to hinder my body. Thank god you tried helping your kids.
Keep up the self advocacy!!!
I grew up having many of the same pains as my child did. I would ask my mom for help too, beginning at the age of 10 and on. My mom is a tough lady, and even though she had the same pain, she taught me it was normal and to tough it out. Problem is, my pain became debilitating when I was 35, and so I was dx with fibromyalgia. First I was dx with anxiety, depression etc......
So when my daughter had pain, I unconsciously taught her to grin and bear it. Fortunately, she is so damn smart and has always been fascinated with science and medical research; so when her symptoms became more serious at age 12, she began some research on her own health and began connecting the dots. It was due to watching a video describing EDS and POTS here on RUclips, that led to her having the BIG AHA! Finally she was hearing from someone else who was experiencing the same problems, but was young like her. After showing me the video, I still didn't understand how severe and degenerative this syndrome can be. It was her self advocacy that kept me learning about it, and realizing how much my mom, myself and my daughter fit the criteria for EDS. Because of the pure luck and blessing of having an amazing pediatric gastroenterologist, my daughter has been diagnosed with EDS, POTS, and gastroparesis, after 3 years of actively testing and ruling out many other conditions.
Finding support and good health care is hard to find sometimes; but remember, it was a young woman in Australia, that finally helped us get on board with believing in ourselves, that our pains are valid, and that being well researched and informed patients is a positive thing! Any doctor who can not tolerate being curious or willing to listen and learn about this unique syndrome and all of the comorbidities that come with it, is not worth your time. You as a patient are essentially hiring the people who are participating in your health care needs, therefore they owe you some of their time and effort in exchange for your time and money. I'm saying this especially to any and all parents out there... listen to your kids!!!! They know their bodies, so if they say they don't feel "normal", listen up!!! Kids want to be healthy and happy. Once again parents.... LISTEN TO YOUR KIDS!
I'm 54 and finally put the pieces of the EDS puzzle together myself. I even had a Reiki treatment yesterday, never heard that mentioned on YT vids before. Thank you for posting, love your sarcasm! 🙏
For most of my childhood and early teenage years I thought everyone had the world go black in front of their eyes when they stood up.
Wait that staticky visual "white noise" in your vision ISN'T normal?? Ugh I'll add that to the list for my next doctors visit. Every time I think I've hit a point where I can't find anything else that points to HEDS I find another quirk that I just thought was 'a normal part of life'. 😂
I have had alot of issues with my ankles starting at the age of 14, chalked it up to sport injuries as I was a very active teenager. At 26, my ankle rolled, I was pregnant and I landed in the hospital for a few days. I rolled my ankle fell down stairs broke tail bone. Few years next major injury was ankle rolled again broke my elbow. Destroyed both knees 1.5 years ago. Currently dealing with my first ankle dislocation at age of 40. Emergency room doctor says I have this.
I’m sorry it took 20+ years for diagnosis, I hope the doctor gave you a referral for all the specialists you need to see ❤
I have never dislocated anything but twisting my ankles from just standing is a regular occurrence. The instability in my joints has caused me to fall many times, even on stairs.
As a child I was described as a cooked spaghetti noodle. I was just that flexible naturally. I was also in constant joint pain, something I just learned to live with. As an adult I've broken many bones due to the instability in my joints, my gastro-intestinal issues have gotten worse and my doctors still refuse to acknowledge anything other than depression.
Great post I've got Ehlers-Danlos Hypermobility as well. Ironically I was a competitive tennis player as well not at college level but state titles. I never thought of it that way about the collagen and being able to put a lot of limey spin on the ball. I am 46 and was dx'd with the hEDS six years ago. I had the hardest time trying to find a doctor who knew what the hell it was and who wouldn't chalk me up as a líon. The doc that diagnosed me specializes in Ehlers-Danlos and I moved across country and had to start new and that was a real expletive, expletive. But I ended up moving back to where my cohesive team of specialists are and they know me, they know the syndrome, and they are taking good care of me.
If you think you might have EDS please have perseverance to get a diagnosis. Mayo Clinic Rochester didn't even get it right with me after 9 months of testing. It was a sleep doctor that suggested I be tested for it after her consultation with me for only one hour.
Hello 🥰 just popping on to say hi and let you know that I set up my RUclips channel to raise awareness for EDS and other chronic illnesses that I have ! Just uploaded my first video 🥰 if you felt like checking it out and maybe subscribing that would honestly mean the world 🥰🥰🥰xx
Chiropractor suggested it for me. Man had been resetting my many dislocations for years at that point. Pretty sure my sister got the same kind of EDS too. She has the same joint and hyper flexible problem I do
I was diagnosed by genetics at Mayo in Rochester.
I am so happy I stumbled across this RUclips Video! I am newly diagnosed at 32, with no treatment plan yet. 😢
When you said your daughter had to hospitalize for her severe pain in between her shoulders, I was thinking I was just crazy this entire time!
This pain had been so severe I have been in prison inside my own body since January of this year.
As a nurse, I have been held to such an unrealistic expectation of perfect health.
I never wanted to be the patient…..😅
This is so true, we did not know until I broke my right leg, I was off school for a year while I healed then had to give up all my land based sports and my dancing as well. I became a blooming good swimmer but was band from doing the butterfly stroke and back stroke because it impacted my shoulders too much.
I had always had pain in my leg bones deep inside, when I complained one day I got told it’s just growing pains I was 4 at the time, I stopped saying anything after that related to any pain I got to that issue, because in my child’s mind I had already been told it’s normal growing pains. It was when I was 14 I had bent over to pick up something my back locked up because the discs all popped out at the same time. Dad helped me to pop them back in and the next day he made an appointment with his chiropractor to check me out. Dr Bird told him that I was hyper-mobile and this would always be an issue for me and would eventually end in surgery. He did tell us to never get any bone manipulation done on my spine ever because of this I also had scoliosis which could never be corrected.
I finally had spinal surgery at the age of 39 because I could no longer live with the pain. This was also when I learned that the pain I had been living with was not normal.
I can be sitting in my chair bend forward to grab something and my lower rib bones would twist, when that happens it puts pressure on my lungs and makes it supper hard to breath. This has always been an issue growing up so I learnt how to breath with short shallow breaths. I have lost count at how many bones in my body I have popped out of their joints, from my fingers to elbows and shoulders my hips and knees all of them from normal movement.
I am now 60 and I’m just learning all of this, there was not much known back in the 70’s when it first started to impact my life.
Wait snow blindness isn't normal 🤯I thought everyone just saw pixels
@Blue Skies thank you :)
My EDS effects my colon and the connectivity tissues in the gut-blood barrier :( it presents as Crohn’s disease and causes histamine and mast cell over activation to effectively every food I eat... it didn’t effect me until I was 19
How are you being treated for it?
Were twins!! Lol mines exactly the same. Eds "Crohn's" interstitial cystitis mastcell activation.
I've had frequent intestinal cramping before switching to IF (intermittent fasting). I generally only eat 2 meals per day within 8 hours with 16 hours before breaking fast.
I also reduced grains and carbs which could have been a factor also.
L-glutamine also us supposed to help strengthen your intestinal tract.
Since doing the above things my cramping has been reduced 99%.
Did you find out how to reduce your symptoms yet?
Mast cells often are the source of inflammation and I have elevated tryptase which weakens tissue.
Mine hit at 25. I have visual snow Syndrome, developed a year ago too. So many comorbidities. Its overwhelming
I will pray for you. I wish you well. I had a friend just diagnosed so I’m watching this too.
April G same here. The moment you find out it’s EDS, you’re relieved you finally have a why, but then a feeling of being overwhelmed comes over you. It’s so much. I try to take it a day at a time. If I think about all of it at once it’s too much. You definitely have to be an advocate for yourself, Doctors don’t know everything. Take care. Fellow 🦓
@@shellyrae777 thank you so much! Love the people I've met the past two years during all of this. I've also found out I have POTS and craniocervical instability and am seeing a neurosurgeon about possible fusion surgery on my neck! It's been incredibly overwhelming to say the least, but I am grateful to have answers to my pain.
😳. My daughter complains of visual snow and has been diagnosed with Irlens Syndrome. We are now thinking she may have EDS
as soon as she said severe pain in between shoulder blades.... that's me and no one can figure out why I have pain there! As I've been reading more and more about Ehlers Danlos I'm thinking this is what I have. It's been 2 years of seeing doctor after doctor and no one knowing what's wrong. I'm am seeing a rheumatologist in a few weeks. Hoping someone can help me
remember one thing, most doctors are idiots. they have no clue and most don't care. you need to be your own doctor. tell them what you know it is and tell them to check it out. they work for you. you are not their test subject. do not let them give you cortisone shots that will destroy your joints. read up on EDS and take all the precautions against the idiot doctors because they can do much more harm than good. they had me go to physio therapy. it messed me up so much I am still suffering from it decades later. doctors or morons. do the research on your own and study. you have to do this for yourself. don't take the anti inflamation pills unless you want to have your guts destroyed more than EDS has already destroyed them. the best thing is pure pain killers morphine and oxycontin mixed so the oxy does not make you a mad angry person all the time. or cannabis. look for the right strain for your pain etc. it is better than the pills. I get all the pills I want but they don't do the job as good as cannabis if you can find the right strain.
Kusnezoff 👍🏽 Doctors without Brains!
Agreed on All points.
I'll add:
Never take Flouroquinolones, or any in that Quinolone family! Dangerous and destructive to our EDS bodies!
Combo of those meds and proper Strains works best for me, as well as Massage, with my herbal oils, heat pads, Hot soaks or showers with cool blasts to combat POTS/dizziness. Learning my Limits, pacing, naps/ rest, Cervical and other support pillows, etc.
Do you get that pain constantly or just from lying down and after sleeping?
Are you a side sleeper? Sleeping on the back helps prevent this issue.
Schedule an upright MRI.
I'm currently chasing a diagnosis and one of my biggest doubts has been that my symptoms were mild until I was about 19/20 none of the research I've found up till now had mentioned that a lot of people develop symptoms after puberty. The all seemed to imply the symptoms started as a child and were consistant
littledergon we all vary. I had comorbid symptoms of POTS, etc as a kid. Mine also worsened with hormonal changes, after each pregnancy, esp.
I was active at 20, but also needed lots of rest, and pain meds helped keep me functional.
Now, I am lucky if I can get out of bed, not writhing and longing for the end of it all.
I was entirely unaware of having it until my bladder prolapsed recently at the age of 20 during what I can only assume is a major flare up. I’m now also chasing a diagnoses and it’s rough, hang in there!
I have has pain in some form in my body, severe fatigue after exertion and very flexible since before puberty. Became very dizzy as a teen but that went away. Pain, fatigue and lack of recovery has now increased to the point of not being able to work in the last year. I'm now out of my forties.
R u female? I am.scared my daughter has it
It hit me like a tornado or hurricane! I didn’t know that I had EDS until I found out it in January of this year. I went to a follow up appointment with my Neurologist for a result of a EEG test I had because I have Epilepsy also.
I’ve had signs of EDS my whole life but wasn’t diagnosed until I was 32. It took me developing RA and breaking both feet stepping down one step for a doctor to notice my hyper mobility. I always knew I was abnormally flexible but I never knew it was a bad thing. A lot of my family are hyper mobile and probably have EDS so it’s a normal trait for us. My oldest son doesn’t appear the have hyper mobility, but he has a lot of conditions that are co-morbid with EDS. My youngest son can lick his elbow so…..
What a great mom
This might help some people. There is a difference between subluxation and dislocation of joints.
I was hit very hard when weaning off a benzodiazepine. It tore me apart. Now diagnosed with EDS. It hit me hard, so many medical issues because of the EDS, chronic pain now, Chiari Malformation, MCAS, etc etc. I'm in Hell.
Note- I've heard of a few others being dx with EDS from brutal benzo withdrawal and longterm damage.
Same situation here. I'm a 36 yo male. 2 years has passed since I stopped benzos and my VEDS is getting progressively worse. Zero brain recovery so far.
@Blue Skies thank you for the info! Can you tell me more about this diet or post a link of the source of this info?
@Blue Skies Thank You very much for the info!
@@sandywhat2429 whoa. ...
you mean the Klonopin I took for 13 years might have something to do with my symptoms dramatically increasing shortly after I stopped. holy cow. gonna have to hit Dr Google for this .
& Yes agree. Zero Brain.
ha. whoever made up the joke " no brain no pain" certainly doesn't have any friends w EDS 🤣😂
Licking my elbow is my Dr. letterman stupid human trick! You're a great mom. My parents have a hard time accepting I have this condition since they don't show signs. I have hEDS, Dystonia, CCI and the kitchen sink.
Very helpful video!! I can add snow blindness to my list of symptoms, I had it for the first 30 ish years ...then was better last 3 decades, but these last couple months it's hitting me like a brick wall again! 🤓😢
My mother always told me “ everyone faints, everyone sees television snow” ( I was 31 when diagnosed. There is “ no normal” for ANYONE but especially for EDS( with chiari and pots etc) if EVERYONE in your family has something naturally a parent DOES think” oh that’s common to all”for instance I never knew it was uncommon not to be able to lick your elbow….
My granddaughters preschool teacher started having symptoms when she was in her 50's, took a long time for her to get a diagnosis. Lot of pain in the meantime.
I don't believe I have EDS, I'm 36 and never had a dislocation and my joints don't seem to have hypermobility . However, because of my symptoms -- I do believe I have undiagnosed craniocervical instability. Oddly enough one of my many symtoms is pulsing and static in my vision.
Look up agent Orange and EDS. My dad was in Vietnam and got sprayed. The agent Orange exposure was passed on to me and my children. I’d never heard of EDS until my niece asked me if I had it. I’ve dislocated my knee twice. I fall down a lot and I just recently broke my ankle in 3 places from rolling my ankle on a 1/2 inch ledge in the garage. My niece just reminded me that I have this and POTS, I guess.
Many believe that Elvis had EDS and that’s what led to his problems the last year of his life
Nice to know what has been wrong with me all these years. My first dislocation I was 24 and I think I have had 12 more since. Also, I have been diagnosed with POTs.
Yes it does.
Mine has hit badly….I feel like I am falling apart. POTS naturopath diagnosed me. MCAS histamine problems since a child Benadryl chronically. On hand. Chiropractor often. Chronic digestive problems my mom and I. 3 hernia surgeries my mom. Plus a sliding hiatal hernia, retroverted uterus , leg pain as a child my mom. My occipital moves …..vomited from it. Years back my chiropractor keeps it in place. Need orthotics for my shoes from my chiropractor. Corns, callous, ingrown toenails all are also EDS . I had a blood vessel burst in my foot once years ago….walking to chiro my foot cramped up and immediately my blood vessels burst. Chronically ill 24/7 just found a dr who believes I have this. Waiting on genetic testing.
Can anything be done to help. I believe I have it. Mammy years. Not as severe as your daughter. I had eye muscle surgery in my 20s as my eye muscle moved all over. I am 76. Much pain in life and as i age it is getting worse. Grandchild has it.
Thank you for the impressive story. You did point out correctly that hypermobility is so common, particularly in girls. I think they have to do a reclassification of the criteria because it’s really confusing with multiple subsets of EDS. We don’t want all these young girls thinking they have EDS because that’s not productive. We need a new classification criteria that is simpler. See if your daughters can do this. I am convinced that this could be something. Can they twirl their tongues? This might be something that is also very common my father, and orthodontist, called them “tongue twirlers”
I honestly think my daughter and I have this but specialists are no help they don’t want to test because they don’t met all the criteria that they need it’s absolutely frustrating
I’m 15 and I have EDS I’m on a walk rn because I found that they help to clear my head my hip and back are killing me and my parents had to call an ambulance for me two days ago because I was screaming in pain due to sleeping on my leg wrong..I had an xray and an ultrasound and they found nothing and I was only given Tylenol (which does absolutely nothing for pain) it sucks because doctors think I am just trying to get drugs and I am but it’s to help with the debilitating pain that I deal with on a daily basis..I cry everyday and some days can’t even get out of bed because of it and it feels like none of my friends understand me and they all think I’m weird but I know it isn’t my fault that I have this and that I am lucky my parents listened to me when I said I was in pain and are trying there best to get me help
I love my mother but damn… I wish I had a mother like that… anytime o had something wrong my mother would tell me “you’re fine” or it’s not this or that… definitely should have had tons of tests as a teenager but mother never listened to what I was saying I’m certain I still have issues from childhood that were left there. Hopefully I can see what’s going on
heh i diagnosed myself with heds then gone to geneticist and she said yes you have it XD, i didnt dislocate anything, though i did notice instability on some ocasions, like i felt something might pop ouit if i dont stop XD, but i belive i didnt dislocate becuse i was hitting the gym since 13 years old, and by 15 i already had like big biceps n triceps n other muscles too, so i belive its good to build muscle with heds. on one ocasion when doing chest press dumbels i felt like my shoulder poped in n out, since then i learned to always support the wieght with my muscles, and never leave it stanindg on joint if that makes any sense XD. i think im hypermobile in every joint, not sure how is my spine though. 9/9 with ease
I had a young hair dresser that had Danilo’s. At first she was real nice and then she became cross. I know now it was because was in so much pain.
I wish you’d explain those medical terms. I have ED but no doctor tells me anything. I’m in so much pain.
I am hypermobity now I'm in constant pain my teeth are giving me problems I was a us national gymnast almost I didn't have to many dislocations as a child I've always wondered why on that one
So helpful thank you!! I was just diagnosed with hyper mobile EDS and I thought it was normal for me to have a huge box full of braces for every joint in the human body!! This was just how I learned to cope because I didn't know I had it and I asked my husband recently wait a minute I'm not so sure it's normal. Do you think it's normal to have big box of braces like I do? Of course he answered No it's not normal!!😂
Thank you!! As a mom with two daughters with hEDS, mast cell, gastroparesis, cranial instability, pots, etc.....it really was overwhelming! First trying to get a diagnosis - as a mom you know something is wrong and having numerous doctors tell you your daughters are fine is quite frustrating and frightening. Then once the diagnosis is made, trying to get the specialists that know how to care for all of the problems involved is emotionally physically and mentally draining. I wish there was a support group for mothers dealing with this. Maybe there is I just haven’t thought about myself for so long…
Your daughters have an Amazing mom in their corner fighting for them what a Blessing!! Hopefully you will get some time soon to just sit back and take a break from the medical world you deserve it!! Sending you a Big hug from Norman Oklahoma.😊💜💜
What kind of doctors can help with EDS and pots? I have every symptom for both but whenever I try to ask my doctors for help, they just give me this blank stare and don’t do or answer anything. Everything keeps getting worse. I was always a super limber kid with high anxiety and stomach issues, but just thought it was me. But now I keep getting more and more debilitating symptoms and am at a loss what to do. I’m in my 30s now and I’d never even heard of EDS until 2 years ago.
Thank you for your comments regarding EDS. One of the trusted resources that we use is the NIH’s Genetic and Rare Disease Information Center. Here is a link to their content on EDS - rarediseases.info.nih.gov/diseases/6322/ehlers-danlos-syndrome/diagnosis. Also, Patient Advocacy Groups can be an invaluable resource for patients and families. The link above includes a list of these groups. We suggest reaching out to one of them, like The Ehlers-Danlos Society - www.ehlers-danlos.com/. We wish you the best of luck on your journey.
31 when mine got bad
Hi. I was 29 and just had my second child when I found something to be off. My skin started becoming more lax and fast. My ligaments are so weak I can feel them roll underneath my skin. Everything pops. Can’t sleep on my stomach anymore because my lower back hurts that bad.
Did you have any of these things happen to you? Especially the skin laxity thing out of nowhere?? My skin was fine healthy young and then, BOOM.
@Lisa Filimon I don't have a lot of the skin laxity but I also can't lay on my stomach due to back pain and I dislocate over 30 times every day. It's so bad now
@@thewoolverine4420 same here , I reacted to an iron infusion drip last year and then it all went down hill. Suddenly couldn’t lift legs or talk above a whisper one day went to hospital for 2 .4 months and was forced to walk in severely damaged joints - not can’t use legs etx after 4 months home , every joint is moving , clunking etc . It’s like dominos
@@onefabknitternz it really is. I recently started a new med for anxiety called buspirone and as a side effect it's been relieving the nerve pain I have from fibromyalgia. I still have a lot of joint pain, but man having one type of pain under control makes a giant difference
I was older. 36 when POTS hit me.
This…sounds like me…I’m a retired ice dancer ….I was okay, and then I wasn’t…
I have a question, what do you mean by snow blindness? I get snow blindness and I have EDS. When I say snow blindness, I mean when I go out and it's daytime and there's snow all around me, I come in the house and I can't see anything. Is that what you're talking about?
hello everyone i have Hypermobility Ehlers-Danlos syndrome and i’m polling other people with eds on whether they think we should change The NPRS to 1-15 for patient of eds please tell me what you think
How did they get diagnosed?
Omg I think I have this!!
Wow.
Wait. You mean that that is not normal. Snow blindness. I see that all the time. And ives had brain surgery too for my blood vessels not staying in place. Now i have 2 aneurysm
It's a club that no one should belong to.
I am fat but i swear have issues
All thanks to Dr Aba for curing me from EDS Am forever grateful
How there is no cure
Is this bish really using a green screen?
lauries spaghetti
karen herards bought yeti
scotts cape cod jetty