What is Ehlers Danlos Syndrome?
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- Опубликовано: 1 окт 2018
- Ehlers Danlos Syndrome is a group of genetic disorders that affect the connective tissue of the body. It affects about 1 in 5,000 people globally. Symptoms may include loose joints, stretchy skin, and abnormal scar formation. For more information about list of expert doctors, hospitals and ongoing clinical trials visit
www.xpertdox.com/disease-desc...
EDS makes you very tired it takes a lot of your energy and I wish people would acknowledge more how hard living with this syndrome is
Have you heard of the spoon theory. If you haven’t search it up it helps
I have it. I hate it,
I agree with u I have it and I get very tired easily
It is really hard to live with it
@@miyahdominique3239 Auto-hemotherapy probably heals eds
My physical therapist told me in my early 20s that I had "loose ligaments." I frequently dislocate my shoulder and can even walk my hip and ankles out of place, which hurts. But I just continue to walk until everything falls back into place. I can pull my thumb back to my forearm and the skin on my hands is extremely elastic. My heart palpatates A LOT and I have been trying to get my doctors to figure out why. I also bruise really easily and can see my blue veins under my skin. I always thought it was because I'm fair skinned in complexion. I recently moved to a warmer climate and have gotten a tan, so my veins aren't as noticeable as they used to me. After watching this, I swear I must have this syndrome. The only reason I started looking up EDS is because I'm watching an episode of Transplant and a patient was diagnosed with it. Now I just have to convince my doctors to test me for it.
i have all this except my hands arent hypermobile and my skin isnt super stretchy. My skin is translucent and very soft for my age. I have thin nose and lips, and very small ear lobes. I've seen pictures of kids with EDS and it was like looking at childhood pictures. I have hyoermobility in my hips, shoulders and spine. I have SPD almost 5 years after giving birth. My father and brother have cartilage issues. I have symptoms of POTS, I have an irregular heartbeat and printzmetal angina. I have frequent migraines. I'm exhausted all the time. I have abdominal issues. There's just too many issued that point to EDS, no doctors want to even entertain the idea when I've brought it up.
Have you found a diagnosis? I just got mine
Please wear sunscreen but the best protection of your skin is to stay out of the sun. Having fragile and thin skin is often a sign of EDS.
Shout out to the producers of this film -the wife just got told she is to be tested for EDS about 4 hours ago. Told me a half hour ago and this video just got me up to speed on what it is
Please be patient and gentle with her and please don't ever, ever minimize her pain. It's excruciating.
And respect her, not
"the wife".
Do Mormons have thin skin?
@@lindajakub624lol get the fuck over yourself obviously she’s respected if the person gives enough of a shit to educate themselves on what she says to them within the hour of hearing the information
I’ve told a former human Biology professor that I have Ehlors Danlsoe syndrome and her response was “What’s that?”
Me too! But it was my health teacher, she had literaly no idea and had never heard of it
www.google.com/url?sa=t&source=web&cd=3&ved=2ahUKEwjz4-bLs83hAhVPPK0KHUgSArUQFjACegQICxAK&url=https%3A%2F%2Fwww.caringmedical.com%2Fprolotherapy-news%2Fprolotherapy-ehlers-danlos-syndrome%2Famp%2F&usg=AOvVaw3W8Hm0amYae67Fu-UB8izj
Most nurses don’t even know and it’s okay! We can just educate them 💜
Because he's a biology professor not a doctor. But I agree awareness is needed.
Gabriel Incognito two likes form me to u
Yep 1 of those 5000 people
Isabelle Woollcott yep me too. Yep same name
Ha
Same here
Me to
Lucky lmao
Having eds makes life quite difficult, my parents had a doctor absent mindset. The visibility of my hyper mobility was quite obvious, as a kid not seeing it as an issue I often had a fun time showing off and even freaking people out. Now as an adult I find much less humor in it.
Ditto😅
Same 😆
I have always known i have EDS since i was 12. But only today that my excessive fatigue may be caused by EDS👀👀
Have you qualify for permanent disability
@@alexismarroquin9137 I was wondering the same thing, because I was diagnosed when I was just 11 years old, back in 1998. There are some weeks that my fatigue is so terrible and is almost crippling that I can hardly even walk. Some just don’t understand what we go through with this condition! Some have it very mild, while others have more severe types.
My brother and I were both born with this condition. However, my brother’s type is much more severe & affects his aorta. After our diagnosis in ‘98, we had MRI’s and other tests done every 6 months. My test were normal, but when my brother hit puberty, his aorta began to expand and grew larger every few months. Just before the end of his sophomore year of high school, the doctors told him to finish up the year and then have surgery as soon as possible, allowing for his summer vacation to be his time to heal and not get in the way of his following school year. He had open heart surgery and his valves replaced! With artificial valves, he must remain on blood thinners for the rest of his life & he regulates his INR from home with a machine the size of a glucose monitor. His INR must remain between 2.5-3.5 in order to prevent any clots. Of course, there are many side effects in taking blood thinners & we’re hoping that there will be new breakthroughs in modern day medicine that allow for my brother & other patients to live a more comfortable life and without as many side effects!
@@KenKaniffFromConnecticut wow well they told me I had that and they checked my heart and siad everything was fine . I just get injured so quickly from any part of my body and my shoulders are very weak . And also feel tired all the time 😴. I will be submitting my permanent disability soon
I have this and I praise you for making such an accurate video, I can show this to family, coworkers, and doctors so they can understand why I can do activities and other times not
A mythical Zeba unicorn here- hEDS, MCAS, POTS, hypoglycemia, Castrochondritis, and Cranialcervical Instability. Didn’t get diagnosed till last year when I was 37. In pain 24/7 but being on Low Dose Naltrexone, CBD/THC (3:1) and Penetrex; this combo has made a huge difference.
I wear a neck collar, (hard and soft) ankle & wrist stabilizers, compression and arm stalkings/gloves, custom Orthopaedic shoe inserts, posture corrector and sometimes need to use a cane. And I go to intensive PT 2 times per week for over 2 1/2 hours each time. This combo has made life more bare able but I’m still pretty miserable and hurt more often than not. I get terrible flare ups that can last from a day or two to weeks.
But, if I wasn’t doing this things, I can’t even imagine what life would be like! My major symptoms didn’t start making themselves known till Feb 2021 and it was from sudden chest wall pain. Then the Mast Cells started acting up. I’m on a low histamine diet and take a DAO enzyme supplement with each meal and am now able to each pretty much anything I want. But there are a few things that I just can’t tolerate like avocados, spaghetti/pizza sauces and high amounts of sugar like a slice of cake.
I am also on full disability. Very blessed to have a wonderful support system and my husband fights this battle with me! I hope by sharing all of this, I can help someone else also. You’re not alone!!
Would you mind sharing how you got these all diagnosed? Which type of doctor do I need
Is hypoglycemia common in EDS? I have this along with many other symptoms. My hypoglycemia is reactive. I am not a diabetic.
I am hypermobile in my hips, spine, knees and shoulders. They frequently dislocate. I can bend all the way to the ground with my hands down on the ground. I have heart problems (tachycardia and printzmetal angina). I have frequent migraines with aura. I have had POTS symptoms since I was a teenager. My skin in translucent, I have varicose veins around my knees although it could be from pregnancy. My grandmother had them bad. My nose and lips are thin. I'm extremely tired all the time. I've had a lot of ovarian cysts. 5 years after giving birth my SPD joint still hasn't healed. Every time I've had something wrong with me, EDS comes up as a cause.
edit: I also tend to get cellulitis.
It just feels like a systemic issue to me. I really would like to get clairity.
This was one of the most thorough and fair presentations I’ve seen this far. It didn’t lump us under one set of symptoms and it even discussed things that are rarely mentioned in a very compassionate way. We also suffer from neurological dysfunction like dysautonomia which has another huge blanket of symptoms. The thing about it… there’s really far too many conditions that arise from having Ehlers Danlos Syndrome to ever name in one single video but this video was better than basic even though it covered a lot of the basics that could help doctors realize that there is a lot more to us, than just stretching and dislocating. Thank you!
I appreciate how informative this video is. My family and I have EDS. I have braces for my ankles and my ribs, spine, etc. frequently pop and move around. My shoulders no longer dislocate and they havent for almost 3 years!(Im 16 now)😊 Hoping that I dont have any internal problems like my mom. It is slightly bothersome when I lose balance but my friends and coworkers have a good laugh every time I walk into things. 😅
I appreciate this video because I've been diagnosed 3 years now, with a lifetime of health issues, and this video is simple for others to understand. I get tired of trying to explain this to people especially medical doctors who should know better lol. Thank you
Thanks for this good overview. An EDS professor lecture on the subject suggests avoiding opiate painkillers contrary to advice in this video.
I have Classical EDS, Thank you for sharing this information with me. Hopefully with Awareness we can educate people!
I have EDS, so I started doing Brazilian jujitsu.
It sucks to have EDS but trust me, nobody can outmanoeuvre you on the mat, you can just reach where they simply can't.
Lol this made me laugh. I used to do BJJ. No one could arm bar me at all 😂
I understand wristlocks are non existent to me all my fingers touch my forearm both ways
It's all fun and games untill you subluxate your hip
Are you still training BJJ?
I thought it was 1 in 20,000 people in the U.S. 5,000 is still a lot though.
I wear knee braces for my pain and I take pain meds.
Corghead Cartoonics you realize that 1 in 5000 is more people than 1 in 20,000 right..?
It's probably more common than this states. It's so poorly diagnosed and not often recognized. Diagnosis can take decades for some.
Because of how underdiagnosed they suspect it to be they're not really sure it could be a lot more common than they have thought
I was diagnosed when I was just 11 years old, back in 1998. There are some weeks that my fatigue is so terrible and is almost crippling that I can hardly even walk. Some just don’t understand what we go through with this condition! Some have it very mild, while others have more severe types.
My brother and I were both born with this condition. However, my brother’s type is much more severe & affects his aorta. After our diagnosis in ‘98, we had MRI’s and other tests done every 6 months. My test were normal, but when my brother hit puberty, his aorta began to expand and grew larger every few months. Just before the end of his sophomore year of high school, the doctors told him to finish up the year and then have surgery as soon as possible, allowing for his summer vacation to be his time to heal and not get in the way of his following school year. He had open heart surgery and his valves replaced! With artificial valves, he must remain on blood thinners for the rest of his life & he regulates his INR from home with a machine the size of a glucose monitor. His INR must remain between 2.5-3.5 in order to prevent any clots. Of course, there are many side effects in taking blood thinners & we’re hoping that there will be new breakthroughs in modern day medicine that allow for my brother & other patients to live a more comfortable life and without as many side effects!
My mom passed this down to me. Im currently 14. When i told some of my friends at school that i had this, they didn’t believe me because i look and act “normal”. Thats ridiculous.
This happened to me too! Im 16 now but junior high sucked I started finding out all of these issues and getting tests done and physical therapy. No one believed me till I dislocated my shoulder in front of them. Then when I told my aweful therapist she didnt believe it dislocated. I told her to check she felt my shoulder and boom! It dislocated. 😂 How are you doing now? I guess its only been a week..😅
Flower Fawn well within a week i broke my ankle 😔 but no dislocations. and it seems to be healing fast so thats good lol
@@rebeccapierce1609 Oh no! I hope you heal quickly! Are yiu active in sports at all? I have some neck and shoulder issues because Im an introverted teen that just reads and draws. Im kind of scared to do sports because I dont know how bad it would get
@@orchidotaku I always was bad at sports. I often have problems with stability of my ankles and have subluxations of my hip.
Yeah... it's not easy to have an 'invisible Illnesses ' sometimes, I get dirty looks useing handicapped parking. My daughter got it from me too😓 she is 15, I didn't know I had it, but she is glad to know I will Always understand her pain like no one else can, and I can fight for her more than another parent could understand
I’m 1 in 5,000. This is a good video to show those you don’t understand. EDS is also under diagnosed, which can lead to misdiagnosis and improper treatment. It also usually takes at least 10 years to get the accurate diagnosis.
😢
People have always asked me why I can dislocate my joints at will with no injury and why I'm so flexible when I dont stretch, I didn't know until I was 14 I had this. Really interesting to be honest and it has saved me from many injuries since my joints will go back In place without injury👌
A friend of mine passed away of Vascular EDS January 17, 2020. She was 40.
Keith Owens 🙏🏽
@Valerie from Oregon her Mother passed away at 68 or 67 from the disease
So young. That is very sad 💔
I'm sorry to hear about your friend.
My parents and I had a conversation today they thought it was best to tell me now that my brother died of Kawasaki disease n that I have eds but it “didn’t develop a lot “ idk how that works but now seeing this explains a lot
Oh gosh I hope you're doing alright! My friend has EDS and while it largely does affect her life she still has a good one, going to school and living with her fiance. You can have a happy life regardless, I hope you know that.
I myself had kawasaki disease a few years ago. I'm so sorry for your loss.
Nico Di Fictional thx it’s okay it’s gotten better throughout the years tho it hurts
Sorry for your loss and I hope you're doing well
One time when I was sleeping, I just turned my torso without moving my hips and guess what? I dislocated my hip and it immediately went back into the socket after I moved my hip into a straight position. It was so painful I feel like screaming. Unfortunately that was not the first time. I had multiple times that I'd dislocated my joints. Shit just crazy!! It is so painful and tiring that I have to be careful on how I move my body 🥲
I am being tested for it and my shoulder dislocates every time I raise my arm. I guess since it is a part of how I function it is relatively painless
@@happy_infp1087 I am going to see the geneticist in a few months. It’s hard to get an appointment though but if you can wait I think that that would be best. Honestly I’m trying to get a diagnosis too bc I have shortness of breath and chest pain too. If it’s that bad maybe you should seek more urgent help but again I’m only a teenager.
@@happy_infp1087 hope you feel relief soon I pray that you will be okay
@@SmellyAlpaca Thank you so much for your prayers ^^ I hope your appointment with the geneticists go well and hope you get treated very soon. I will pray for you too
My physical therapy is really helping! I made my own dinner 3 days in a row! Super exited to actually do the things I like to do. :)))
You goooo!!!! 😇😇💛💛💛
What kind of things do you do if you don't mind me asking please? I'm nearly 30 and trying to get a diagnosis but I think it's going to be a while. My fatigue and joint pain is just getting worse even when I'm doing all the right things that used to keep me right 😔
@@LouisaWeez i would def suggest looking to the cause of exhaustion and pain (exp. is it joint issues or muscular pain or nerve issues etc?) for me my exhaustion was caused by my heartrate spiking to like 160 whenever i stand up i have POTS aswell i take propranalol only a small dose in the morning and that has helped a crazy ammount to keep my heartrate around 100! As far as pt goes i do a recumbent bike so im leaning back and i do about 40 mins of cardio now 10 min warm up and then i do like 10 min at a higher level and then 3 min break in between i started off doing around 15 mins total like i have just been working up to longer times. As far as pain goes never get on any addictive pain meds its really not worth it they dont work very well. I was put on oxy for a surgury and i was baffled by how little it helped. Medical merijuana genuinly has more pain releif its pretty crazy. Im on alot of meds that basically change the way my brain sees pain? And im not pain free now but its about a continuos 6-7 daily where it used to spike up too a 10 throught the day. I take duloxotine, nortryptaline (the other virsion of this gave me wheight gain) gabapentin cause i have nerve damage and baclofen which is a muscle relaxer. When i dislocate something or subluxte something the muscles contract and get tense so it can look almost like tourettes. Pt is also very good for the muscle tension which is a big bulk of my pain. Its also good because we want our muscles to be able to be big enough to hold in our joints without alot of help from ligaments. i started taking creatine supplements and protein powders before working out and i can certainly say the muscle growth has been incredible for my pain. Strengthening the muscles surrounding the joints is def a must for people with eds ! Resistance bands are a really good idea theyre pretty cheap and super easy to use! Its all so facinating and bizzare i really hope you feel better soon! Im now pretty much 20 but i was in pt sense 16 and when i was undiagnosed it was so hard to treat cause there was so much confusion over all the bizzare symptoms that seem unrelated yanno? Its a long proccess but we deserve a happy painfree life ❤️❤️❤️
PAINFUL! ...& exhausting..That pretty much sums up E.D.S.🙄🦓
Young and new Zebras, please don't be scared though, there are Lots of options, medication and PT therapies that help and really work and a Big community of all ages to love, support and teach you!:) I love you All! And it can get better!💛🦓
As a toddler I had my ankles wrapped so I could learn to walk (in the 1940s). As I gained weight, I had stretch marks all over my lower torso. Unable to ice or roller skate because of my weak ankles. Was not able to take gym in school. Both knees dislocated when in the 10th grade. The right kneecap and tendon never returned, even after 3 surgeries. Had total right knee 24 years ago. Both shoulders are dislocated. I can't remember a time when I was not in excruciating pain, grinding of my joints, including neck and lower back. I need an exoskeleton.
I didn’t know I had it until my daughter was diagnosed with her severe form of POTS, which I also had but didn’t know. I was asked to ‘perform’ my hand mobility in class to the amusement of other kids that couldn’t do it. I’ve been lucky on my facial skin though since I’m 61 and have the skin of someone in their 30’s.
I also have pots and eds
I hate EDS It has taken so much from me...
Friends told me to check this out for their aunt has a lot of the same symptoms as I do, I will have to check it out with my doc because it would explain a lot,... The random dislocated joints my hip that keeps failing me, extreme flexibility, the unnatural loss of blood with small wounds, chronic fatigue, wounds not healing, more big joint problems,....
In the process of getting diagnosed with this. hEDS runs in my family and I've had all the symptoms since I was a small child. If I do turn out to have it, it will be bittersweet. I'd be happy to finally know what's wrong with my body, but also sad & angry that it went completely unnoticed and untreated for over two decades. I have been in constant pain since I can remember. My parents took me to the doctor, and I've gone by myself since I was a teenager, and all of them refused to test for it. I have massive ganglion cysts all over my body, which is a common in people with EDS. One of the many cysts I have is in my right hip joint, it's so large it can't be operated on, and the surgery to fix it is so hard to do that there are only 2 surgeons in my country that could perform the surgery. I have suffered my entire life. I am in pain during every waking moment. The doctors labelled me as "over dramatic", "attention seeking", "delusional" and "hysterical" because I refused to be gaslit & strongly advocated for myself. If I do end up being diagnosed, I am going to be absolutely FURIOUS. I will get my diagnosis printed out and I will confront every single doctor that said I was a liar. I wasn't lying, I wasn't over reacting, I wasn't delusional. I've been in agony for my whole life. I am hoping that with this diagnosis, I will finally be taken seriously, and I'll get proper treatment. I'm so tired of being exhausted and in pain constantly. My body is breaking down already and I'm only 21.
My mom is going to be tested for it as well. She in a lot of pain and can't work because of it. She didn't know about it until my step sister was difficult with it and i was telling her about it. She has all of the symptoms but no one would listen to her. If it ends up that she does have it she also wants to get me and my sister tested. I dont have any pain, with the exception of my hips, but i have a lot of the other symptoms as does my sister.
I'm so glad to share with you my experience on how I got rid of my EDS with dr imenherbal herbs on RUclips channel. No more chemo. am completely free. Thanks Doc. ruclips.net/channel/UC1PVLGW
I saw about 10 different doctors and still haven't been diagnosed with EDS even though I have all the Hallmark signs of it. Between this and my KC being misdiagnosed, made me lose faith completely in the medical field. I don't trust any doctor or nurse as they've never helped me, only accusing me of things.
Check out TMS Dr schubiner
@@TheTyronecus yeah it's hard work
I had achalasia looked into first in my early teens
Doctors picks up on my pelvic floor prolapsing out of nowhere
One surgeon sat me there and pulled my thumb down to my wrist I never knew I could do that
When I was sent to to a rheumatologist to be diagnosed still going through genetic testings
Thanks sir
I have it....AND I PROUD OF IT!😁
Even though I always lose my balance even when I'm walking through a straight path..BUT IT'S FUN THOUGH BECAUSE I MAKE MY COUSIN'S AND MYSELF LAUGH😅 AND I DIDN'T COMPLAIN ABOUT IT.. Even though I always have headache...BUT IT'S OKAY BECAUSE EVEN THOUGH I FEEL THAT WAY IT'S MY HAPPINESS ANYWAYS 😊
Fun? You must be a very young Zebra, I have never heard it called fun before... quite the opposite
My mom has been disabled by this for over 3 years. FUN?
I feel like you’re a kid, or you have it very mildly. This syndrome is the opposite of fun. We’re in pain ALL THE TIME. Some people are bed and wheelchair bound. Some people have fatal complications. It’s not fun at all.
it can be fun in some occasions some "tricks" to show and all that and the pain is not too much.
Unfortunately in my case I don't have fun days only pain day and dislocation days. Everyday I have to put all my bones back in place when I wake up and trust me that's not fun at all.
I'm glad for you that you have the chance to make it fun, hopefully it stays like that for you and doesn't get worse with time :)
Sorry but you called EDS fun?!?
my bones keep losing place and it hurts like hell and you call it fun?
People are making eds a trend. Like bro its not flexibility and stretchy skin. Its bruising, bleeding. Not fun.
I got a quection. Can you have EDS With only skin symptom? My skin is super thin and super stretchy, spesially On the neck and on my arms.
mine pain problem started just 2 years ago i am 28 now, pt have become a part of mine life as well that excerices for stability helps, some times i got a bad healt, but further than that i got preaty good energy and no problem with medicationm i was a swimmer for almost ten years i guess that really hepls back then´cause when i was diagonosis i even did not have any sintoms yet, hope the quarentin ends soon so i can go back to swim again.
I went to school with a girl in elementary school who I now believe had this. She was very skinny and fell sometimes and would get hurt. She could bend her fingers, arms, and legs is positions no one else could.
Sounds like me growing up. Skinny, fell quite a bit and would get hurt. Now at 40 I am still skinny without trying. Finally diagnosed with EDS 5 years ago.
I recently got diagnosed with Eds so I’m just kinda doing research and I don’t know how I didn’t realize before because I have so many symptoms
I thought its just one of my behavior, but now that I'm 24 years old, just knew I have EDS.
I really don't want to self diagnose here. But would make a history of "loose" joints (with frequent pain and swelling) especially knees, hips and shoulders alongside scoliosis and generell pains and aches in ellbows, ankles e.g. as well as falling up stairs, be worth bringing this to my doctors? We're really at the end of our ropes for what it could be especially because there is no apparent damage at the moment but I've still got problems.
I'd say its worth a shot. That worst that happens is you walk away with no answers and you're back were you started.
Can it just be stretchy skin? No hyper mobile joints or other symptoms mentioned, but very loose stretchy skin
A few mornings a week I wake up and my jaw is locked, my skin on my feet are stretchy, my bones always crack, I have abit of hypermobility
Hola quería saber el Gracias primeramente por este video
I want to live but I also want to die at the same time
So people with hEDS don't have an extremely stretchy skin? Do you need a genetic testing for the diagnosis? I've never dislocated a joint (yet) but I'm hypermobile and I also struggle with unexplainable tiredness, weak muscles, GI problems, palpitations and headaches. I'm vegan so doctors like to blame my diet but my blood test incl. vitamin levels are good
How to make this type or presentation or videos?
My case is strange, as I am the only people in my family who has it. There’s nobody in my extended family who has it.
autohemotherapy
I am like this, too. I guess we have the first genetic mutation in our families.
Near infrared red light therapy works for me. Buy the bulb, it’s cheaper and works better, however this syndrome gets worse with age after we start loosing our muscle mass. Very painful and often misdiagnosed with fibromyalgia.❤
I actually honestly think I, and part of my family have this.. How did noone in my family know this...
it's "rare", i.e. highly underdiagnosed because doctors think it's rare and therefore aren't familiar with it xD
iris
Very few doctors have the knowledge to diagnose this. And when u do get a diagnosis of this you will have multiple doctors to treat the different things they’re able to treat or apraxia life in... Such as pain doc, stomach doc, etc. I have a loved one with it. It’s definitely hereditary. You get it from a parent is what I understand from her having it.
Because doctors dont know about this, i suggest getting tested pr seeing a genesis
I wish i could look at my mums past but she's adopted and wants nothing to do with them(her dad) since she knows what happened but that may br why i have this
I got a 9/9 on Beighton Scale…. Plus stretchy skin.
I have the hypermobility one but i dont have any symptoms, maybe a bit clumsy and sometimes fatigue.
Not everyone with hypermobility has this I believe.
I have this hypermobilty and only problem I have is that my right lig like the bottom part of my leg pops out of socket from time to time
I can control my proximal phanlax on my left index finger and my IP joint on my right thumb because of this I can flick my index finger up and down and my right JP joint pops on command
That's scary to how it fits in my life. I don't like that. I can't have another illness.
My dad gave me this and when I tell the teachers I have eds they don’t listen and make me do it and I’ve hurt myself lots of times
Don't do it love, I'm begging
Can. Ehlers-danios cause svs
I dont know if I Have this or not!
I Have very bendy fingers but not that much. My skin isint stretchy and I suffer no pains exept in my neck but thats most likely my posture. My hands are wrinkly but nothing else is. I sometimes have dizzynes when i stand up from my bed but that like 2 Times a month. And my wounds heal pretty Normaly. I Feel extremely tired during Morning but other than that im energic during Day and Evening.
I have EDS and mostly I’m crying all the time because of an emotion symptom 🤍 I’m bringing my favourite stuffed animal to school rn for an emotional support buddy now
Also I find my EDS worsens with age especially after menopause when you begin to loose your muscles. Exercise as long as you can if you can. So very painful. And look out for stretchy veins. Weird but I have them .
Jehovah Rapha
My veins roll. Is that what you mean by stretchy? How do you know if they are stretchy?
My genetic variant is 306 out of 405... How scared should I be? I've never even heard of this but my dna says I have so many markers.. everything fits to a t...
Well I have type 3 I dislocate basically I cant play tag with out dislocating my hip its sucks! I also want to be a police officer and that's a hand on job... keep in mind I cant play tag let alone a police officer! So I'm going to have to do physio therapy! Also may is the awareness month!
I have been bad at running, too. I also have mitral valve prolapse. So if have more physical activities my heart will hurt and I have to cough.
@@franzpeters3824 thats not good i only have type 3 thankfully and i just got my ECHO so ill hear back about my heart i think its all good tho!
Yes, you have to manage your expectations and make realistic plans for your future with your future health in mind. Its good to talk to older Zebras that will be honest with you of what to expect. You can still have dreams but in different ways like, maybe you can't be a cop but that doesn't mean you can train cops, work in a forensic field etc..
@@franzpeters3824 Be safe Zebra and God Bless🙏💛
I am hypermobile and i can do hitchhikers thumb
Here’s the thing, I haven’t been diagnosed and I don’t plan on self diagnosing anytime soon because this is a serious condition, but I realized today that I could reach that part of my wrist with eight of my fingers, fold my thumb like the one on the picture, reach my toes with a straight knee without issue and I also am extremely clumsy where I almost broke my ankle three times walking on a flat surface and only wearing slippers...what do y’all think?
CF Rc12 hey!! i have been able to bend my ankles, knees and fingers my whole life, and i was SUPER clumsy when I was young. I have since broken multiple bones and due to the syndrome my bones heal very slowly, making everything a whole lot worse. I just got diagnosed with hEDS and this sounds exactly like what I was going through. I don’t know if this helps, but I would be happy to answer anything else!!
@@elliebelle4417 Thank you for responding, I deeply appreciate it! my mom wants me to get diagnosed by a doctor for a doctor's note after the lockdown now because Im from a school that focuses heavily on sports, cheerdancing, and P.E, and If you don't participate, you fail your card.
I think maybe... any other things? Easy bruising? Stretchy skin? Flat feet/no arches? The Hypermobility type is more common then we think.
@@orchidotaku I mean, I don't know if this counts, but I have what I call "Goat's knees" where I can invert my knees or bend them inwardly and walk like that for as long as I want, I could also reach both my hands as a prayer at my back (helpful for zippers).
@@orchidotaku The easy bruising is a possibility, but I can't confirm because I have natural discoloration that are in patches on my legs because of my allergy with sweating and heat.
I have it and I hate it it’s hard to go to school
I've had Ehlers Danlos Syndrome my whole life
Since it is genetic, everyone who has EDS has had it their whole life. 😉
Omg. I have every one of these symptoms
I saw a Junko cosplayer with EDS
Yvie Oddly sent me here.
now i know why i'm so clumsy
Elias Eisenberg just cause you have one of the genes doesn’t mean you have it
@@larabarnett9590 I also have stretchy skin and my feet are flat and I can do weird stuff with my fingers so ... Its 80% chance I have it
@@larabarnett9590 I also have stretchy skin and my feet are flat and I can do weird stuff with my fingers so ... Its 80% chance I have it
@@eliaseisenberg108 Holy crap I have all of those, do I have it?
@@eliaseisenberg108 You probably do have the hypermobility type🤣🤣
Please,does someone know how to cure the GI problems??
I can't function normally without PPI,and i've been taking it for at least 5 years and the condition seems to worsen year by year
Apples have helped me a bit, I eat one every morning and every night with 2 tums tablets (at night) for acid issues. Idk if it'll help but i hope so
sage, boil and drink, you can find it in middle eastern markets. Also, try apple cider vinegar with the mother diluted with water
Sia has this btw
I have it
Same
i am 99.9% sure i have EDS. i have most (and i mean MOST) of the symptoms and i’m utterly miserable! 😁 though i haven’t gone through anything that could lead to a diagnosis and im not sure ill get one until im 18 and im able to go through it all on my own. 😀 life is exhausting 🙂 please help me 😐 i am in constant pain and am unable to live comfortably ☹️ (enjoy my emojis. this is how i cope.)
You might be able to get a diagnosis, but it can be difficult to find a specialist who can do that. You'll really to ask your gp for a referral to a geneticist.
Hello fellow EDS people!
Hello!
Hello!
Does anybody know why sutures are bad? Funny thing, when I’ve had sutures, the doctor says they’ll dissolve, and they never do. They never believe me when I say they won’t dissolve. Is this part of EDS?
It is a huge part of EDS and I have the same issue. Internal stitches are rejected by my body and it's taken 3 surgeries with internal stitches causing infections and rejection for doctors to finally get it. in EDS bodies they don't dissolve. However, getting a doctor to listen to you about this until they see it for themselves is as effective as herding cats.
It’s weird my last name is also a type of syndrome.
Trying to get a dx but dr don't listen
I just found out I have EDS and I'm 33
Does it accelerate aging?
No but it accelerate bone deterioration due to the tearing of our skin
Me with EDS: falls…ruptures my quad
I have this
Who tf would dislike this
is that true that we only live 40 years with this condition
Apparently it varies. Some people have an event and die but many live normal life spans, but the older you get the more your joints hurt. At least that’s what I read.
Omg. I'm always straining my shoulder knees elbows hips wrists. Always dislocating my jaw just bt chewing
I have about half of these syptomes, so what do I do now?
The ehler danlos society site has a directory with name of doctors that know about EDS. You can choose your country and go to visit one to check it
I'm so glad to share with you my experience on how I got rid of my EDS with dr imenherbal herbs on RUclips channel. No more chemo. am completely free. Thanks Doc. ruclips.net/channel/UC1PVLGW
I have Jhs highpomoblty sinddrom😟🤗
I have ehlers danlos syndrome I started showing signs ween i was 8
I think I may have this my skin doesn’t stretch and not hypermobile. But I have had recurrent prolapses. Umbilical hernia my tendons round my knees are “loose” I have been told I have fibromyalgia. Pain all over and chronic fatigue struggle holding pens and toothbrush had a deviated septum repair when standing always go dizzy. Suffer from rapid heartbeat (tachycardia) does this sound like I could have this?
My mother also has what you described and she has been diagnosed with an auto imune disorder. She thinks she might have this instead just like you and her skin doesn’t stretch either. Her degree of hypermobility is very low and only in her arms. She has tachycardia as well! I think this is worth considering and refer this to your doctor!
You dont have to have every symptom
it sounds like cci/aai
Hi since posting this I have been diagnosed with Eds hypermobile. I passed the criteria and I didn’t realise how mobile I was. Nothing really been done since being diagnosed just on my normal pain meds
@@aroma101524 when people have Eds, they start to get instability in the cervical spine in several cases. check it out
Yep 1 of the 5000 here
I wish Sia stays healthy.
Sia, the singer/songwriter?
I have EDS and my life is normal but i can stretch good
hEDS diagnosed but only because I couldn't afford the tests. Soon though I'm thinking it will be dEDS
الشعب العربي مافي حد ياخذأجر ويترجم لنا الكلام ارجوكم حد يترجم ابنتي تعاني وانااعتقدانهامصابه بهذا المرض لكن اريد اتأكد
مرض جيني وراثي يصيب النسيج الضام او الانسجة و بتخلى المفاصل بترخى - المرض ليه ١٣ نوع - من اعراضة اصابة الجهاز المناعى - وجع البطن و العظام - الارهاق و التعب - الصداع النصفى - شد الجلد الى مستوى فوق الطبيعى - خلع الكتف و الركبة و المفاصل بسهولة - عدم القدره على السير فى خط مستقيم بسبب عدم التوازن
www.mayoclinic.org/ar/diseases-conditions/ehlers-danlos-syndrome/symptoms-causes/syc-20362125
الرب يشفي بنتك. هذا المرض موجود في كل العالم. اعمل فحص جينات للتأكد.
My whole family has it (I do too!)
Are u a boy
Yvie 😭😭😭
Me too. My grandma could turn in her feet to face backwards.
I can do that.
Plus side of it, I've never been pinned in a thumb war.
Is it possible to have this in only 1 finger? Cause I think I do.
people with EDS should make a discord group..