I second this. People need to hear about invisible illnesses as much as possible, for awareness. I've asked for help out at the grocery store and they will help but generally with reluctance because I look young and healthy. Really, by the end of a grocery trip, I am in a great deal of pain and at risk for a flare.
The worst thing is not knowing. Being in pain and not knowing. Pushing through, but not knowing. I’m currently searching for answers to my stomach pain, joint pain, and skin pain. The hardest thing is not being able to describe my pain. I just don’t have the words for it. My pain is always changing and I’m really forgetful. It’s only getting worse so I’m really pushing to find some answers. I like to watch your videos because you describe the pain really really well.
My daughter and I have Classical, so I'll share a little bit about how it affects us. The mutation is on our COL5A2 gene. I don't have too much joint pain and am only moderately hypermobile mostly in my hips, knees and hands, but I have severe GI involvement including gastroparesis (my worst symptom.) My skin isn't as delicate as some others with classical, possibly because the mutation is on the A2 and not the A1 gene, and I only have two atrophic scars and normal healing time. My daughter has skin comparable to mine, but she has much less GI involvement. Mostly she is just EXTREMELY hypermobile with her elbows bending back 30 degrees past normal and pronounced lumbar lordosis. She also experiences lots of ankle and shoulder injuries. We both have POTS, but aren't too bothered by it. Both of us get echocardiograms every 5 years, with no signs or aortic dilation as of yet. Hope this comment helps some who are curious about the classical type. I can pretty much guarantee that my father also has, though he'll deny it.
Interesting about your father - upon learning of EDS (I have hEDS, but with significant GI problems), mine also denied having it. Plus he insisted it couldn’t have come from his side of the family. And yet, his hands and fingers were very flexible and he had TMJ so bad his jaw would often disconnect his jaw just opening his m😊
My physical therapist suggested I get a collagen biopsy, and I blew it off as just belonging to a hyper-mobile family. I talked to my mom, and apparently a lot of her side had spontaneous aneurysms, and my mom has POTS. I'm going to take this advice seriously even if it doesn't end up being EDS. Thanks for sharing your knowledge and experiences!
I appreciate this post. It however it is 4 years old so there has been a bit more findings specifically talking about Classical-like eds. So if you newly diagnosed and looking for answers for cleds dig a little deeper. Greatful for the post and awareness this post brings.
Izzy, I just want to say thank you for making these videos. I have suspected hEDS, and mild Gastroparesis. Your videos have been a huge help in my health journey. Honestly if it wasn’t for your video on Gastroparesis I wouldn’t have realized that’s what I’m dealing with. So truly, thank you.
I'm so so so happy to hear my videos have helped you out. I really hope you can find some good docs to confirm the diagnosis and discuss some things that might help you out like avoiding gastroparesis trigger foods and meds to help manage pain better!!
I already knew much of this but the way you synthesized, summarized and prioritzed the info was so fluid and helpful! Thank you so much :) I will send this to my family to help them explain - my mom keeps calling me freaking out because she googled my disorder and sees things about spontaneous organ rupture and whatnot, mostly for vEDS. I try to explain that I have hEDS but *facepalm*
I have hyper mobile EDS. My ribs had subluxation in my pregnancies. It was horrible. Worst pain I can ever describe...and you can’t take anything to reduce the pain. Once my babies were born it was over...but my goodness! Pain of your ribs basically coming apart..I don’t wish that on ANYONE!!! . I have POTS but it’s not too bad and bad IBS etc. my joints in the left side of my body are loose and my hip and shoulder dislocate frequently, but as I’m aging it’s not as frequent. My right side does do that at all (??) I was extremely flexible in school, always doing crazy tricks that made people freak out. I am so glad to know this is what I had because for years I wondered why I was in so much pain at a very young age and why I had IBS and POTS. It’s all related. I take Kratom for my pain and it usually works pretty good. Helps with arthritis pain mostly.
@@mandydoyle2936 I live in Florida so it’s in all the smoke shops. There are a few states that have bans but most are not banned at all and are even sold at gas stations. There’s many online retailers and one that I used was Star Kratom and Urban Ice Botanicals. If you live in a banned state I’m sure if you went to a smoke shop the person behind the counter could tell you how to get it. It’s. A. God send and for me it’s not addictive at all. If you were to stop taking it I’d probably taper off by taking a little less everyday until it was zero. But I’ve suddenly stopped taking it and nothing happened at all so I guess I don’t take that much compared to some people 🤷🏼♀️
1 month until I see the first genetic expert since I connected all dots and checked on the symptom that never bothered me (skin) what opened my eyes. Wish me luck that I get a diagnosis after 10 yrs of pain being considered a hypochondriac even within my own family.. 🦓
Thanks to your videos I'm finally doing something about my achy and unstable joints. I am 29 and can barely walk because of my knees, both hurt but the left one can barely hold my weight without bending the wrong way. I am not saying I have EDS but I recognize everything you talk about. First video I watched I was like: Omg, that's literally me you're describing! :O I kept watching more of your videos and from other youtubers as well as reading about EDS, trying to prove myself wrong, telling myself that you cannot just watch a video on the internet and think you have a disease, but the more I learn about it the more I see myself and my entire life and childhood in the symptoms and stories from people with EDS. So this thursday I have an appointment with my doctor because I want to talk to her about this. Even if it's not EDS I will at least get some help with my knees and overall joint pain and instability which I've wanted for a long time but I've just ignored it until now, mostly because I was raised not to complain and as a kid when I said something to my mom about my knees constantly popping, my fingers hurting or the fact that I fainted every day at school, I wasn't taken seriously. She only took me to the doctor when I had fainted every day for like a year and I had constant stomach pain but they didn't find anything other than my normal heart murmur that I was born with. They just said my blood pressure was going a bit bananas, which they thought was gonna go away with age. It has not. :P But whatever... I just wanted to say I'm thankful for youtubers like you that post these informative videos to reach out to people who might need to learn, because if I hadn't seen your channel in my recommended videos list I wouldn't have got the inspiration I needed to actually see a doctor. If I wait longer and keep going as normal without seeking help I know I will just be in even more pain in the future, so thank you. I haven't connected the dots between my hypermobile joints and the pain before. Had NO clue. And one thing is for sure, my friends have called me rubber man since kindergarten but I'll never do another "party trick" again. It used to be fun when I was 6 but now I have to stop myself because I know it will hurt for 2-3 days after. I might only have to show the doctor obviously but that will be worth it. Ok, I'll shut up now, hahaha. Sorry for long comment.
Thank you so much for talking about EDS so publicly!!! I was diagnosed with hEDS about 6 years ago but recently I've had quite a few issues with my blood vessels; veins leaking in my tummy, minor organs getting inflamed and all that funky stuff. I've been able to show your videos to my friends to explain my pain and illness and you explain everything so clearly and intelligently, you are a great help and advocate!
My Neurologist diagnosed me with the Classical type. I don’t know what type my dad would have, but I have heard things that would explain where my EDS came from. My dad’s side of the family, my mother had Osteogenesis Imperfecta which causes brittle bones. I have easy bruising and muscle weakness, thus causing me to be a high fall risk. I use a cane to help keep me from falling. I have stretchy skin on my hand, under my eyes, and neck behind my ears. The COL5a1and COL5a2 genes that causes my type of EDS also causes Osteogenesis Imperfecta.
I would just like to add that with hEDS 1 in every 15 people will also have Cranialcervical Instability. (Which sucks!) Also, hEDS and the others will also most likely have Mast Cell Activation Syndrome and need to be in a low-histamine diet. Also, hEDS will also cause Costochondritis which is extremely painful and disabling when in a flare. And anything can set it off out of no where. It feels like you’re having a heart attack! Thanks for all that your doing to spread awareness!! I wasn’t diagnosed till I was 37 and am sure feeling it now more than ever. (I’m 38). It feels like it kinda came out of the blue and it started with Costochondritis Mast Cell allergies.
Wanted to comment years later after this was made. Reclassifications have been made to clEDS and is usually due to TNXB Deficiency but also is now associated RARELY with AEBP1 mutations.
Latest papers are pointing out for 6 of 100 people... Being one of the most COMMON diseases !!! I'm talking about all types of EDS - vEDS accounts for 20-25% EDS population which is almost 2:100; btw vEDS can be displayed as COL1A1 mutations (Neither OI Type 1 nor EDS VII) - also COL5A1, COL5A2 and other rare EDS types are linked to late life bloodvessels issues
@@IzzyKDNA Latest papers are pointing out for 6 of 100 people... Being one of the most COMMON diseases !!! I'm talking about all types of EDS - vEDS accounts for 20-25% EDS population which is almost 2:100; btw vEDS can be displayed as COL1A1 mutations (Neither OI Type 1 nor EDS VII) - also COL5A1, COL5A2 and other rare EDS types are linked to late life bloodvessels issues
this is an amazing channel and i love how you talk and spread awareness to these different conditions, my sister has POTS EDS and GP so this channel is really a great way to spread awareness and also teach people about the things you and others go through. Thank you
I know this is so old now, but Izzy, you give me much hope. I was FINALLY diagnosed with hEDS (definitely met all the test criteria according to my rheumatologist) and I can’t even explain the struggle between 20 years of trying to get a diagnosis, to now, living in Seattle with the best UW medical. I was rejected from the EDS clinic because hEDS has no “gene” to study. There is nothing more disparaging than a letter of rejection from an EDS clinic when Tupi have hEDS because you don’t have the right genes. Now, every doctor has to google the disease (or it feels like it l, and I end up crying in all of their offices. OR thru think I’m asking for pain meds. I’ve never asked for it been on them. I just need any sort of relief. Prolotharapy? Anything. I’ll fly anywhere to feel accepted and vindicated.
Really interesting. I have hEDS, guessing the cheek swab I had was to rule out other types rather than specifically identify mine but I also did baitmens and heartscans etc. Its interesting to hear about genetics passing on because I am among the first generation to be diagnosed in my family but can see a pattern of who has/had it in previous generations
diagnosed hEDS here, got diagnosed at 13, basically bed bound, wanted to look into the other types and i’m so thankful i don’t have the other ones that sounds terrifying
I will admit when she said foot deformities my stomach leaped into my chest. Both me and my dr were like, maybe hEDS but many symptoms seemed wrong. clEDS however, that could be realistic. Thank you for this resource or I would have been stuck in imposter syndrome hell for so much longer
Good information, thanks! This is the first time seeing anything about ClEDS... I have h, with possible overlap of v (given the organ rupture issue... still trying to get in to a geneticist for that testing).
Wow, I wonder if clEDS could be something to mention to the doc, seeing how it's similar to the classical type without atrophic scarring but the more likely addition of heart complications.
i have hypermobile EDS however my father and his brothers had both hypermobile and vascular EDS and all had aortic aneurisms, 3 died suddenly, my father was caught and had surgery but had complications and only lived a few years. Evidently I don't have that because I've had checkups. I do have hypermobile EDS and my joints are always a problem. I literally feel your pain! Thanks for your channel.
My mother has it and I watched your video and I Display most of the symptoms that you have described I'm horribly terrified but I go into the doctor here in a few weeks
I have a working diagnosis of hypermobile type. I have 3 girls and they are all hyper mobile. One has autism spectrum disorder which I hear can be common with EDs I can’t tell you how bad I feel that I passed something so painful on to them. I would never want them to live this life. I didn’t know! I feel terrible.
i got diagnosed with eds 5 years ago, but im not sure what type. my blood is somewhere in a freezer waiting to get genetic testing done which was taken a couple months ago. I just want to know what type i have. but thank you for your videos they are really helpful since there is not a lot out there about eds and not a lot of people speak openly about their eds.
I just wanted to say that hi! I'm just starting my journey with hypermobility diagnosis(or rather the suspicions of it by my pt and gp but they haven't sent me to any specialists yet it's only been 2 weeks), after years of "fun flexibility" turning into disabilitating pain over the last 8 years. Only just got diagnosis started by showing my new pt (for extreme hip and back pain) this weird standing position I subconsciously do where my feet turn so far inwards (almost going backwards) and resting my knees on eachother. I do this when I'm standing in one place for more than a couple minutes. I am flexible everywhere else too, except knees. My 8 and 10 yr old daughters have learned over the last few years all these cool flexibility tricks they can do with their bodies, like turning their arms around twice while palms are flat on the floor (gross), or sticking their scapulas out I swear it's like 5 inches from their back, the splits, legs behind head. We can all do the backwards prayer, touch thumb to wrist, bend pinky way past 90°(amongst other digits), elbows bend backwards, and my hips and ribs are dislocating/subluxing. My skin is kinda stretchy and you can see veins throughout most of my body. I also have POTS symptoms, diagnosed with IBS, and chronic anemia but now also my white blood cells and whatever the 3rd count is has been constantly lowish for at least a year. My mom and brother both have multiple joints that have dislocated multiple times as well. Some from a slight high fall, and some from bumping into things. I also have state insurance so, I think that is going to hinder some of my resources. Sorry for the long post. Good luck to you and don't over stretch! Lol
This was so helpful. Thank you, also I am going to pain management and going to get a scan of my heart to make sure that I don’t have any other form of EDS besides hEDS
I did not know there was more types of EDS ? Or how its tested. As i been recently told i have POTS & EDS... + so be interesting to see genetic testing & how its tested. I kept saying to local GP i have two distinct different types of chronic pain going on and was dismissed for years 😢 thank you for your videos...
One thing I have never seen mentioned is the problem with tooth decay, the inability of the gums to hold tight to the teeth allows decay resulting in loss of teeth very early. Hearing problems because the inner ear is very reliant on tiny filaments I lost most of my hearing during the birth of my first child. I also lost my sense of smell after falling and landing on my nose breaking out the tissue responsible for smell. My daughter became paralysed during her 4 th month of pregnancy because her hips stretched so much regained at birth of child
Thank you very much Izzy for this explanation. It reallly helped me a lot because I have read sooo many of the EDS journal articles part way but couldnt finish due to eye problems. I have saved many of your videos to show drs since I received the gaslighting treatment from way too many drs resulting in no diagnosis at 56 yrs old (been trying for 30 yrs). Daughter recently saw a Rheum that says thinks it is jHS so hoping she finally gets correct diagnosis.
I'm very sure I have hEDS I pass all the home tests but my pain is pretty mellow. It does varie though so just because the pain isn't really bad doesn't mean I can't have it. I'm not going to go to a doctor to get diagnosed though because you can't fix hEDS anyway.
Hannah Schaffer; my youngest also has hypermobility disorder. Apparently she doesn't tick all the boxes for EDS despite having the soft velvety skin, the stretchiness (not enough apparently) the chonic joint pain, multiple dislocations or subluxations, IBS with slow gut (not paresis, yet). She also has some signs of Marfan's but does not totally qualify for that either. Very frustrating.
Hi! You are such an inspiring persevering woman! Thank you for these videos! My best friend has EDS and her two little girls 10 and 11 are just recently diagnosed. What ideas could you maybe think of that we could send them to help them with pain or are they any vitamins or food supplements or advice or anything that you've found to help or any specific like things you can think of that might encourage them or help support them? Thank soooo much!!!
Hi! thank you! If we are talking non-medications, then heating pads, braces for the bad joints, physical therapy, ice packs....maybe they could get like really cute reusable ice packs or heating packs. like if they look cute (like the shape of a lady bug or something), then maybe they wouldnt mind using it!
I HATE having EDS...recently diagnosed after years of pain, suffering, misdiagnosis and failed spinal surgery....SO if my having a Shih Tsu a for sure sign of EDS? and OH...I also have Mast Cell disease...allergy list is growing...and keiloid scars...failed spinal fusion...oh my GAWD...the pain.
Can someone confirm hEDS is less life threatening than cEDS? What I read in dutch literature both have a normal life expectancy. cEDS seemed like the type to hope for if I had to pick one. Someone close to me got the "diagnose" cEDS from the new physio today, who also has a close relative with this condition and therefore recognized it. Official testing will be done soon. I understand there is overlap but was kinda hoping it would indeed be the classical type if it has to be EDS.
I've just been diagnosed and petrified they said I have hypermobility type but I do have stretchy skin I was worried that I had veds type as I do have a small chin pointy nose ect but my docs are refusing to test for veds as I'm 40 and haven't had a serious incident yet! I've also never dislocated anything but I do have spine issues stenosis spondylolisthesis and a pars defect
It could be your parents each carry a different gene or one parent has more than one gene. Or if you have not been genetically tested you were misdiagnosed.
So I'm diagnosed with EDS, although I think I just assumed it's hEDS. (I also have *severe* POTS) But - Do you mean to tell me they can give me a genetic test to see if I have the other types?!??! If Yes, I'm going to be asking my doctor about this!!
we thought i had hEDS but my genetic testing results just came back and are pointing to classical-like EDS due to a mutation in TNXB and now i’m just confused! lol
What are the specific alleles or variants? Is that public data/knowledge? I can review my raw data genes in 23andme and I'd love to be able to point it out to a genealogist.
hey idk if you’ll see this but i’ve got hyper mobility in learnt everything apart from my legs and arms and recently my arms have been mildly dislocating (best way i can describe it) i literally have to lock me elbows so they ‘click’ back in what is this and what shall i do as it’s painful xo
KaityJane1995 Hi there, not sure you’ve gotten an answer but in my case yes mine have changed and flare.. My lifetime symptom is dislocations and organ prolapse’s, I developed Raynaud‘s in my 20’s Chronic Venous Insufficiency in my 30’s and well 40’s I’ve got all of the above😬🤪 So to answer your question most definitely. The hardest thing with EDS is there’s no 2 alike🤷🏻♀️💙
Hi. Thanks so much for making these informative videos. I have been suffering with what I now think are EDS symptoms since I was young. I was treated like a hypercondriach so many times that I began to believe it, so have kept quiet about my pain and unstable joints etc for a long time now. But you've finally given me the courage to bring this all up with my doctor. I seem to sit in the Heds diagnosis, but there are a couple of other types that I might fit in too, so I'm not sure which to ask to be tested for. Do you know if the doctor can test for a few of the types at the same time with genetic testing?
Hey! I'm sorry docs have made you feel that way...It's unfortunately a common story. But yes, they can genetically test for all EDS types at the same time, and most panels actually include related diseases like Marfan Syndrome and Loeyz-Dietz. Before getting tested, definitely mention you want to whole panel or mention which types you want to be tested for.
@@IzzyKDNA thanks so much for getting back to me. I'll definitely take your advice and ask for a full panel. Thanks again for taking the time to make these videos and reply all these comments, you're awesome 😊
I am not good at genetics. Do you know if I have hEDS would that mean my kids can only have hEDS or can they get classical or classical like, too? My daughter is diagnosed with hEDS, but I overheard my son's podiatrist (Patrick Agnew, he is an expert in podiatry for EDS patients) say he suspects classic EDS for my son. My son had all those problems with his surgery, so that is what the doctor is basing in on plus the family history and my son being hypermobile.
I know your comment is already 4 years old, so hopefully you have all be diagnosed already. But if your son has cEDS, you and your daughter have it most likely too. Although the symptoms may vary, some have it more severe than others.
geneticists and rheumatologists are the most common to diagnose this! there is a blood genetic test for all the types other than hypermobile EDS, but hypermobile EDS makes up about 90% of all people with EDS. for those people they need to run through the extensive clinical criteria :)
There's no genetic test for hEDS, unfortunately, but there's one for the other 12 types. However, there's an extensive clinical test for the diagnosis of hEDS. I think you def need to be clinically evaluated for hEDS, but then if you can get genetic testing for the other types, then that'd be great! I'm assuming the doc didn't make it clear but they are sending you to first see if you have one of the other types. That's just my guess though
They are finding out though that some of us with hEDS have the defect of the TNXB gene as well. I had found this great site for medical professionals and it shows TNXB as the gene for hEDS. Problem is genetic testing is so expensive that doctors don't want to do it for any of us, even if vEDS is suspected. So it's possible that TNXB is the gene, or one of them, for hEDS but since we aren't being tested for it, we can't find out.
A hEDS diagnosis is supposed to rule out the other 13 types (in theory), and genetic testing is not standard protocol for doctors or insurance companies. Thankfully The Ehlers-Danlos Society announced the HEDGE study this year which is collecting DNA from 1000 hEDS patients to try and identify a genetic marker. Participants have to join their Global Registry first to be selected. www.ehlers-danlos.com/hedge/ I was clinically diagnosed with hEDS by a geneticist, but they didn't run a full genetic EDS panel until they found a large aortic aneurysm on my first echo. No TNXB mutation was found. My only "targeted mutation" is on COL12A1, which has only been associated with myopathic EDS at this point. My variant is not shared with any of the 6 families in the world diagnosed with mEDS, and my symptoms are not a great match with those 6 representatives. So my mutation just floats in a government database with 100 others waiting to be researched. My removed ascending aorta sits in a research tissue bank as well. I'm still labeled with hEDS in the meantime. I am thrilled that there is finally some funding/research, but I am concerned hEDS has become a "kitchen sink diagnosis" of connective tissue disorders, and results will be blurred by people who actually have one of the other 13 types, some who do not have EDS at all, and some who have novel form(s) of EDS. A second aneurysm was found in my brain 6 months after the open heart surgery to repair the aortic aneurysm. Nobody can confirm or deny that my vascular complications are just extraordinarily bad luck for a young hEDS patient, or if a more sinister pathology is occurring. You combine in other diseases known to cause similar symptoms/damage like late-stage Lyme Disease, which I've also battled, and things becomes even more muddled.
Waiting for genetic testing because I have varying traits that aren't really explained by hEDS which is what I was originally told I have, my mum definitely has EDS, my grandmother we think had it and we think my aunt has it too with her needing knee replacements young, but none of them ever had genetic testing. I'm also fat which makes it harder to see some things that were more obvious when I was a kid. This video is really informative and helpful for me to be able to list down some traits that I didnt realise were EDS related rather than another of my conditons, my rheumatologist basically told me they don't deal with EDS so I have to go to a specialist center and there are only 2 sort of near me😅
Sorry i forgot to tgank you for the infomation, I had to ask this now before i forgot again. I've been looking for infomation on blader issues with eds since I've been having some problems. At first we thought it was just UTIs but when i when to the doctor about it, there was no bacteria in the sample they tested and i was told that it could have been inflammation of the blader. The doctor i went to also looked at the back of my legs looking for purple dots which can be a sign if eds.
Hey Jade! I don't really know that much about EDS and bladder issues, other than the fact that I KNOW FOR A FACT I pee way more than anyone else does lol. but i can point you to some resources that might be helpful. Check these out! hypermobility.org/help-advice/the-bladder-pelvic-floor/ www.ncbi.nlm.nih.gov/pmc/articles/PMC3545343/
@@IzzyKDNA thank you so much. I just got back from the EP and i have some posture exercises and some exercises to help with my shoulders. I'll be going every week for more exercises. In a couple hours i have my pediatrician appointment and I'll be talking to him about my bladder issues and my joints.
Asymptomatic Joint Hypermobility is very common, but it causes no issues whatsoever. Generalized-HSD is not very common but more common than hEDS and causes issues but is not hEDS. hEDS is the most rare and affects many systems, not just the joints. :)
I know you aren’t a doctor, but if I have pots, mast cell disorder, congenital abnormalities that required surgery, stretchy skin and daily subluxations, but only have a 5/9 on the Beighton scale, what are your thoughts? Could it be eds?
Hey! So the about the beighton score, you actually only need a 5/9 to pass. I only have a 5/9. But yeah, wow, if you have all of this then I really really REALLY think you need to be evaluated for EDS. Obviously everything you said here isn't the full criteria, but just from hearing this, I do think it sounds like EDS. Please find a doc and keep me updated!
Iam a hypper mobility patient from India. I have joint dislocations( hip,jaw,shoulder).. gastritis mussle and joint pain. I can't walk because of pain. Our doctor said, here's no treatment,only physiotherapy can helpful.l can't know English very well because I am a Malayalee from Kerala (India).can you help me...
Oh no, im sorry to hear this. Are you able to use a wheelchair to help with your joint pain? Physiotherapy can definitely help to stabilize the joints. Pain management is a big part of the disease. I take duloxetine, but there are many other medications that can be very helpful for pain that have relatively few or no side effects. I also use a heating pad, hot water bottle and ice for the pain. using a foam roller to roll out my muscles that hurt can help too. I'm wishing you the best, and hopefully these things can be helpful.
I would love to see you give a TED talk. This is a condition that really needs greater public awareness. You're no doubt the person to do it Izzy!
omg thank you! that's so nice! tbh I'd love to
I second this. People need to hear about invisible illnesses as much as possible, for awareness. I've asked for help out at the grocery store and they will help but generally with reluctance because I look young and healthy. Really, by the end of a grocery trip, I am in a great deal of pain and at risk for a flare.
OMG YESSS Please do a Ted Talk!!
yess
The worst thing is not knowing. Being in pain and not knowing. Pushing through, but not knowing. I’m currently searching for answers to my stomach pain, joint pain, and skin pain. The hardest thing is not being able to describe my pain. I just don’t have the words for it. My pain is always changing and I’m really forgetful. It’s only getting worse so I’m really pushing to find some answers. I like to watch your videos because you describe the pain really really well.
Mariela Menchaca i totally relate to this. Dr have failed me too many times to count
My daughter and I have Classical, so I'll share a little bit about how it affects us. The mutation is on our COL5A2 gene. I don't have too much joint pain and am only moderately hypermobile mostly in my hips, knees and hands, but I have severe GI involvement including gastroparesis (my worst symptom.) My skin isn't as delicate as some others with classical, possibly because the mutation is on the A2 and not the A1 gene, and I only have two atrophic scars and normal healing time. My daughter has skin comparable to mine, but she has much less GI involvement. Mostly she is just EXTREMELY hypermobile with her elbows bending back 30 degrees past normal and pronounced lumbar lordosis. She also experiences lots of ankle and shoulder injuries. We both have POTS, but aren't too bothered by it. Both of us get echocardiograms every 5 years, with no signs or aortic dilation as of yet. Hope this comment helps some who are curious about the classical type. I can pretty much guarantee that my father also has, though he'll deny it.
Maru Ato Who do I go to for diagnosis I have a hip since 21 that disabled me due to constant subluxion I’m now 41.
Very strange behavior to pull that level of detail.
Interesting about your father - upon learning of EDS (I have hEDS, but with significant GI problems), mine also denied having it. Plus he insisted it couldn’t have come from his side of the family. And yet, his hands and fingers were very flexible and he had TMJ so bad his jaw would often disconnect his jaw just opening his m😊
My physical therapist suggested I get a collagen biopsy, and I blew it off as just belonging to a hyper-mobile family. I talked to my mom, and apparently a lot of her side had spontaneous aneurysms, and my mom has POTS. I'm going to take this advice seriously even if it doesn't end up being EDS. Thanks for sharing your knowledge and experiences!
I appreciate this post. It however it is 4 years old so there has been a bit more findings specifically talking about Classical-like eds. So if you newly diagnosed and looking for answers for cleds dig a little deeper. Greatful for the post and awareness this post brings.
Samee I can't tell if I have more of heds or cleds atm 😭
Izzy, I just want to say thank you for making these videos. I have suspected hEDS, and mild Gastroparesis. Your videos have been a huge help in my health journey. Honestly if it wasn’t for your video on Gastroparesis I wouldn’t have realized that’s what I’m dealing with. So truly, thank you.
I'm so so so happy to hear my videos have helped you out. I really hope you can find some good docs to confirm the diagnosis and discuss some things that might help you out like avoiding gastroparesis trigger foods and meds to help manage pain better!!
I already knew much of this but the way you synthesized, summarized and prioritzed the info was so fluid and helpful! Thank you so much :) I will send this to my family to help them explain - my mom keeps calling me freaking out because she googled my disorder and sees things about spontaneous organ rupture and whatnot, mostly for vEDS. I try to explain that I have hEDS but *facepalm*
Yeah vEDS and hEDS are quite distinct. Def send this over or some resources about it so she's not like freaking out! 😀
I have hyper mobile EDS. My ribs had subluxation in my pregnancies. It was horrible. Worst pain I can ever describe...and you can’t take anything to reduce the pain. Once my babies were born it was over...but my goodness! Pain of your ribs basically coming apart..I don’t wish that on ANYONE!!! . I have POTS but it’s not too bad and bad IBS etc. my joints in the left side of my body are loose and my hip and shoulder dislocate frequently, but as I’m aging it’s not as frequent. My right side does do that at all (??) I was extremely flexible in school, always doing crazy tricks that made people freak out. I am so glad to know this is what I had because for years I wondered why I was in so much pain at a very young age and why I had IBS and POTS. It’s all related. I take Kratom for my pain and it usually works pretty good. Helps with arthritis pain mostly.
I have hEDS and am finally getting my ribs corrected via a hypermobility PT. My rib flare is INSANE and caused a cascade of issues
Where do you get your Kratom from, please 🙏 this pain is unbelievable
@@mandydoyle2936 I live in Florida so it’s in all the smoke shops. There are a few states that have bans but most are not banned at all and are even sold at gas stations. There’s many online retailers and one that I used was Star Kratom and Urban Ice Botanicals. If you live in a banned state I’m sure if you went to a smoke shop the person behind the counter could tell you how to get it. It’s. A. God send and for me it’s not addictive at all. If you were to stop taking it I’d probably taper off by taking a little less everyday until it was zero. But I’ve suddenly stopped taking it and nothing happened at all so I guess I don’t take that much compared to some people 🤷🏼♀️
1 month until I see the first genetic expert since I connected all dots and checked on the symptom that never bothered me (skin) what opened my eyes. Wish me luck that I get a diagnosis after 10 yrs of pain being considered a hypochondriac even within my own family.. 🦓
How'd it go?
Thanks to your videos I'm finally doing something about my achy and unstable joints. I am 29 and can barely walk because of my knees, both hurt but the left one can barely hold my weight without bending the wrong way. I am not saying I have EDS but I recognize everything you talk about. First video I watched I was like: Omg, that's literally me you're describing! :O I kept watching more of your videos and from other youtubers as well as reading about EDS, trying to prove myself wrong, telling myself that you cannot just watch a video on the internet and think you have a disease, but the more I learn about it the more I see myself and my entire life and childhood in the symptoms and stories from people with EDS. So this thursday I have an appointment with my doctor because I want to talk to her about this. Even if it's not EDS I will at least get some help with my knees and overall joint pain and instability which I've wanted for a long time but I've just ignored it until now, mostly because I was raised not to complain and as a kid when I said something to my mom about my knees constantly popping, my fingers hurting or the fact that I fainted every day at school, I wasn't taken seriously. She only took me to the doctor when I had fainted every day for like a year and I had constant stomach pain but they didn't find anything other than my normal heart murmur that I was born with. They just said my blood pressure was going a bit bananas, which they thought was gonna go away with age. It has not. :P But whatever... I just wanted to say I'm thankful for youtubers like you that post these informative videos to reach out to people who might need to learn, because if I hadn't seen your channel in my recommended videos list I wouldn't have got the inspiration I needed to actually see a doctor. If I wait longer and keep going as normal without seeking help I know I will just be in even more pain in the future, so thank you. I haven't connected the dots between my hypermobile joints and the pain before. Had NO clue. And one thing is for sure, my friends have called me rubber man since kindergarten but I'll never do another "party trick" again. It used to be fun when I was 6 but now I have to stop myself because I know it will hurt for 2-3 days after. I might only have to show the doctor obviously but that will be worth it. Ok, I'll shut up now, hahaha. Sorry for long comment.
♥♥♥
Thank you so much for talking about EDS so publicly!!! I was diagnosed with hEDS about 6 years ago but recently I've had quite a few issues with my blood vessels; veins leaking in my tummy, minor organs getting inflamed and all that funky stuff. I've been able to show your videos to my friends to explain my pain and illness and you explain everything so clearly and intelligently, you are a great help and advocate!
My Neurologist diagnosed me with the Classical type. I don’t know what type my dad would have, but I have heard things that would explain where my EDS came from. My dad’s side of the family, my mother had Osteogenesis Imperfecta which causes brittle bones. I have easy bruising and muscle weakness, thus causing me to be a high fall risk. I use a cane to help keep me from falling. I have stretchy skin on my hand, under my eyes, and neck behind my ears. The COL5a1and COL5a2 genes that causes my type of EDS also causes Osteogenesis Imperfecta.
Were you able to confirm a type through testing? Be well xx
I would just like to add that with hEDS 1 in every 15 people will also have Cranialcervical Instability. (Which sucks!) Also, hEDS and the others will also most likely have Mast Cell Activation Syndrome and need to be in a low-histamine diet. Also, hEDS will also cause Costochondritis which is extremely painful and disabling when in a flare. And anything can set it off out of no where. It feels like you’re having a heart attack! Thanks for all that your doing to spread awareness!! I wasn’t diagnosed till I was 37 and am sure feeling it now more than ever. (I’m 38). It feels like it kinda came out of the blue and it started with Costochondritis Mast Cell allergies.
Just got diagnosed with VEDS and am in the process of getting the tests for POTS. This was very helpful, thank you 💜
Wanted to comment years later after this was made. Reclassifications have been made to clEDS and is usually due to TNXB Deficiency but also is now associated RARELY with AEBP1 mutations.
Not wanting to be nut-picking, just to avoid confusion in the viewers: hEDS it says 1 in 250000 instead of 1 in 5000
yeah I know, I realized after I put the video up!!! oooops... thank you though!
Latest papers are pointing out for 6 of 100 people... Being one of the most COMMON diseases !!! I'm talking about all types of EDS - vEDS accounts for 20-25% EDS population which is almost 2:100; btw vEDS can be displayed as COL1A1 mutations (Neither OI Type 1 nor EDS VII) - also COL5A1, COL5A2 and other rare EDS types are linked to late life bloodvessels issues
@@IzzyKDNA Latest papers are pointing out for 6 of 100 people... Being one of the most COMMON diseases !!! I'm talking about all types of EDS - vEDS accounts for 20-25% EDS population which is almost 2:100; btw vEDS can be displayed as COL1A1 mutations (Neither OI Type 1 nor EDS VII) - also COL5A1, COL5A2 and other rare EDS types are linked to late life bloodvessels issues
on the other hand, "healthy" hypermobility accounts for up to 15-25% population
@@MyIndieWishlist What's the name of the study or studies? I do a lot of research and I can't find anything about it being 6 out of 100.
this is an amazing channel and i love how you talk and spread awareness to these different conditions, my sister has POTS EDS and GP so this channel is really a great way to spread awareness and also teach people about the things you and others go through. Thank you
I know this is so old now, but Izzy, you give me much hope. I was FINALLY diagnosed with hEDS (definitely met all the test criteria according to my rheumatologist) and I can’t even explain the struggle between 20 years of trying to get a diagnosis, to now, living in Seattle with the best UW medical. I was rejected from the EDS clinic because hEDS has no “gene” to study. There is nothing more disparaging than a letter of rejection from an EDS clinic when Tupi have hEDS because you don’t have the right genes. Now, every doctor has to google the disease (or it feels like it l, and I end up crying in all of their offices. OR thru think I’m asking for pain meds. I’ve never asked for it been on them. I just need any sort of relief. Prolotharapy? Anything. I’ll fly anywhere to feel accepted and vindicated.
Really interesting. I have hEDS, guessing the cheek swab I had was to rule out other types rather than specifically identify mine but I also did baitmens and heartscans etc. Its interesting to hear about genetics passing on because I am among the first generation to be diagnosed in my family but can see a pattern of who has/had it in previous generations
I've got EDS (classical) , I feel so much better that someone is getting the word out what EDS is x
diagnosed hEDS here, got diagnosed at 13, basically bed bound, wanted to look into the other types and i’m so thankful i don’t have the other ones that sounds terrifying
I will admit when she said foot deformities my stomach leaped into my chest. Both me and my dr were like, maybe hEDS but many symptoms seemed wrong. clEDS however, that could be realistic. Thank you for this resource or I would have been stuck in imposter syndrome hell for so much longer
Good information, thanks! This is the first time seeing anything about ClEDS...
I have h, with possible overlap of v (given the organ rupture issue...
still trying to get in to a geneticist for that testing).
Wow, I wonder if clEDS could be something to mention to the doc, seeing how it's similar to the classical type without atrophic scarring but the more likely addition of heart complications.
i have hypermobile EDS however my father and his brothers had both hypermobile and vascular EDS and all had aortic aneurisms, 3 died suddenly, my father was caught and had surgery but had complications and only lived a few years. Evidently I don't have that because I've had checkups. I do have hypermobile EDS and my joints are always a problem. I literally feel your pain! Thanks for your channel.
We think I have EDS and Pots because I am extremely hypermobile and I have gastroparesis
I hope you can find a doctor to evaluate you for EDS!!
A Mannen in Jesus name be healed
@@meolahresseh5031 chronic illness cant be healed- it may get better over time, but it wont heal
My mother has it and I watched your video and I Display most of the symptoms that you have described I'm horribly terrified but I go into the doctor here in a few weeks
I have a working diagnosis of hypermobile type. I have 3 girls and they are all hyper mobile. One has autism spectrum disorder which I hear can be common with EDs
I can’t tell you how bad I feel that I passed something so painful on to them. I would never want them to live this life. I didn’t know! I feel terrible.
Would love to hear about kyphoscoliotic Eds! Thanks for the great info
i got diagnosed with eds 5 years ago, but im not sure what type. my blood is somewhere in a freezer waiting to get genetic testing done which was taken a couple months ago. I just want to know what type i have. but thank you for your videos they are really helpful since there is not a lot out there about eds and not a lot of people speak openly about their eds.
I just wanted to say that hi! I'm just starting my journey with hypermobility diagnosis(or rather the suspicions of it by my pt and gp but they haven't sent me to any specialists yet it's only been 2 weeks), after years of "fun flexibility" turning into disabilitating pain over the last 8 years. Only just got diagnosis started by showing my new pt (for extreme hip and back pain) this weird standing position I subconsciously do where my feet turn so far inwards (almost going backwards) and resting my knees on eachother. I do this when I'm standing in one place for more than a couple minutes. I am flexible everywhere else too, except knees. My 8 and 10 yr old daughters have learned over the last few years all these cool flexibility tricks they can do with their bodies, like turning their arms around twice while palms are flat on the floor (gross), or sticking their scapulas out I swear it's like 5 inches from their back, the splits, legs behind head. We can all do the backwards prayer, touch thumb to wrist, bend pinky way past 90°(amongst other digits), elbows bend backwards, and my hips and ribs are dislocating/subluxing. My skin is kinda stretchy and you can see veins throughout most of my body. I also have POTS symptoms, diagnosed with IBS, and chronic anemia but now also my white blood cells and whatever the 3rd count is has been constantly lowish for at least a year. My mom and brother both have multiple joints that have dislocated multiple times as well. Some from a slight high fall, and some from bumping into things. I also have state insurance so, I think that is going to hinder some of my resources. Sorry for the long post. Good luck to you and don't over stretch! Lol
I'd like to share my videos of their odd contortions somewhere to get an opinion, but don't know where.
Thanks for sharing! ❤
This was so helpful. Thank you, also I am going to pain management and going to get a scan of my heart to make sure that I don’t have any other form of EDS besides hEDS
glad to hear it! good luck
Hannah Murphy Any update?
I am hyper mobile and have pots and I have 100% confidence that I have heds by analyzing about my childhood
I hope you can find a good doc to evaluate you for EDS. good luck!
Thank you
You are a gorgeous woman! Thanks for sharing your stories! 💖🇨🇦
Thank you!! ❤
I did not know there was more types of EDS ? Or how its tested. As i been recently told i have POTS & EDS... + so be interesting to see genetic testing & how its tested. I kept saying to local
GP i have two distinct different types of chronic pain going on and was dismissed for years 😢 thank you for your videos...
great video! don’t know if you know this already but in the hEDS criteria you wrote 1 in 250,000 instead of 5000. just wanted to let you know
yeah I know, I realized after I put the video up lol!!! thank you though
One thing I have never seen mentioned is the problem with tooth decay, the inability of the gums to hold tight to the teeth allows decay resulting in loss of teeth very early. Hearing problems because the inner ear is very reliant on tiny filaments I lost most of my hearing during the birth of my first child. I also lost my sense of smell after falling and landing on my nose breaking out the tissue responsible for smell. My daughter became paralysed during her 4 th month of pregnancy because her hips stretched so much regained at birth of child
I have cardiac valvular Eds my heart makes super fun sounds
I have vEDS! 😖
Thank you very much Izzy for this explanation. It reallly helped me a lot because I have read sooo many of the EDS journal articles part way but couldnt finish due to eye problems. I have saved many of your videos to show drs since I received the gaslighting treatment from way too many drs resulting in no diagnosis at 56 yrs old (been trying for 30 yrs). Daughter recently saw a Rheum that says thinks it is jHS so hoping she finally gets correct diagnosis.
Could you do a video on the other more rare types of eds, like myopathic eds and kyposcoliosis eds?.
yeah ill add it to my list and see when i. can get to it
Thank you for all of the information.
I'm very sure I have hEDS I pass all the home tests but my pain is pretty mellow. It does varie though so just because the pain isn't really bad doesn't mean I can't have it. I'm not going to go to a doctor to get diagnosed though because you can't fix hEDS anyway.
I don't have EDS but I do have Joint Hypermobility Syndrome
Hannah Schaffer; my youngest also has hypermobility disorder. Apparently she doesn't tick all the boxes for EDS despite having the soft velvety skin, the stretchiness (not enough apparently) the chonic joint pain, multiple dislocations or subluxations, IBS with slow gut (not paresis, yet). She also has some signs of Marfan's but does not totally qualify for that either. Very frustrating.
I am diagnosed HEDS but my muscles are weak as well. Now that I'm 48 my muscles tear easy and I cannot build muscle
Hi! You are such an inspiring persevering woman! Thank you for these videos! My best friend has EDS and her two little girls 10 and 11 are just recently diagnosed. What ideas could you maybe think of that we could send them to help them with pain or are they any vitamins or food supplements or advice or anything that you've found to help or any specific like things you can think of that might encourage them or help support them? Thank soooo much!!!
Hi! thank you! If we are talking non-medications, then heating pads, braces for the bad joints, physical therapy, ice packs....maybe they could get like really cute reusable ice packs or heating packs. like if they look cute (like the shape of a lady bug or something), then maybe they wouldnt mind using it!
I HATE having EDS...recently diagnosed after years of pain, suffering, misdiagnosis and failed spinal surgery....SO if my having a Shih Tsu a for sure sign of EDS?
and OH...I also have Mast Cell disease...allergy list is growing...and keiloid scars...failed spinal fusion...oh my GAWD...the pain.
I'm having trouble getting genetic testing for EDS because I don't know my family history. I'm adopted, which makes genetic stuff complicated.
Yes, helpful and very informative 👍
I was initially diagnosed with hEDS.. well my genetic testing shows I have the COL5A2 mutation
How would you get genetic testing?
Can someone confirm hEDS is less life threatening than cEDS?
What I read in dutch literature both have a normal life expectancy. cEDS seemed like the type to hope for if I had to pick one. Someone close to me got the "diagnose" cEDS from the new physio today, who also has a close relative with this condition and therefore recognized it. Official testing will be done soon. I understand there is overlap but was kinda hoping it would indeed be the classical type if it has to be EDS.
I've just been diagnosed and petrified they said I have hypermobility type but I do have stretchy skin I was worried that I had veds type as I do have a small chin pointy nose ect but my docs are refusing to test for veds as I'm 40 and haven't had a serious incident yet! I've also never dislocated anything but I do have spine issues stenosis spondylolisthesis and a pars defect
Hypermobile and potsie here 😂 also have a parachute mital valve
It’s strange because my brother has classical like type EDS and I have Hypermobility type.
It could be your parents each carry a different gene or one parent has more than one gene. Or if you have not been genetically tested you were misdiagnosed.
I'm pretty sure I've got classical-like eds, I'm an aspergers Syndrome but I have not been diagnosed with eds
I’m getting genetically tested for EDS and POTS in April :(
Want to know moreabout the other types of EDS.
I was officially diagnosed with ehler danlos today... we are doing genetic testing to see what kind I have.... ugh 😩
Nina, did they say how long till you get the results back? I hope your doctor can help you do well!
Bonnie Moerdyk at least a month... me too!
So I'm diagnosed with EDS, although I think I just assumed it's hEDS. (I also have *severe* POTS) But - Do you mean to tell me they can give me a genetic test to see if I have the other types?!??! If Yes, I'm going to be asking my doctor about this!!
we thought i had hEDS but my genetic testing results just came back and are pointing to classical-like EDS due to a mutation in TNXB and now i’m just confused! lol
I was diagnosed 17 years ago as heds but I’ve always had some classic symptoms and wondering if I might have classical-like
I have EDS and i would like to know if you should go to the doctor if you have it. So what do I do?
Hi Izzy,
Brilliant videos 😀
Could I ask how common classical-like EDS is? Like what is its prevalence? Thanks 😊
Right now the only statistic I've seen is less than 1 in a million, but with the idea that it's probably more common than that and just underdiagnosed
Do you have to have stretchy skin to have vascular eds
What are the specific alleles or variants? Is that public data/knowledge? I can review my raw data genes in 23andme and I'd love to be able to point it out to a genealogist.
My muscle and skin are very soft I go gym then to
hey idk if you’ll see this but i’ve got hyper mobility in learnt everything apart from my legs and arms and recently my arms have been mildly dislocating (best way i can describe it) i literally have to lock me elbows so they ‘click’ back in what is this and what shall i do as it’s painful xo
My geneticist says there is no genetic testing for EDS yet, that diagnosis is only clinical. Is that correct?
Hey, do you know if symptoms can flare up and change as you get older?
KaityJane1995 Hi there, not sure you’ve gotten an answer but in my case yes mine have changed and flare.. My lifetime symptom is dislocations and organ prolapse’s, I developed Raynaud‘s in my 20’s Chronic Venous Insufficiency in my 30’s and well 40’s I’ve got all of the above😬🤪 So to answer your question most definitely. The hardest thing with EDS is there’s no 2 alike🤷🏻♀️💙
Hi. Thanks so much for making these informative videos. I have been suffering with what I now think are EDS symptoms since I was young. I was treated like a hypercondriach so many times that I began to believe it, so have kept quiet about my pain and unstable joints etc for a long time now. But you've finally given me the courage to bring this all up with my doctor. I seem to sit in the Heds diagnosis, but there are a couple of other types that I might fit in too, so I'm not sure which to ask to be tested for. Do you know if the doctor can test for a few of the types at the same time with genetic testing?
Hey! I'm sorry docs have made you feel that way...It's unfortunately a common story. But yes, they can genetically test for all EDS types at the same time, and most panels actually include related diseases like Marfan Syndrome and Loeyz-Dietz. Before getting tested, definitely mention you want to whole panel or mention which types you want to be tested for.
@@IzzyKDNA thanks so much for getting back to me. I'll definitely take your advice and ask for a full panel. Thanks again for taking the time to make these videos and reply all these comments, you're awesome 😊
@@misshtm2447 glad to hear it! :)
Does it have to be pass down from parents.
What type of doctor do you need to visit to confirm any Eds?
what are the differences between cvEDS and vEDS
I am not good at genetics. Do you know if I have hEDS would that mean my kids can only have hEDS or can they get classical or classical like, too?
My daughter is diagnosed with hEDS, but I overheard my son's podiatrist (Patrick Agnew, he is an expert in podiatry for EDS patients) say he suspects classic EDS for my son. My son had all those problems with his surgery, so that is what the doctor is basing in on plus the family history and my son being hypermobile.
I know your comment is already 4 years old, so hopefully you have all be diagnosed already. But if your son has cEDS, you and your daughter have it most likely too. Although the symptoms may vary, some have it more severe than others.
What kind of physician diagnosis this syndrome? Is there blood work that can diagnose, or only the lists and tests?
geneticists and rheumatologists are the most common to diagnose this! there is a blood genetic test for all the types other than hypermobile EDS, but hypermobile EDS makes up about 90% of all people with EDS. for those people they need to run through the extensive clinical criteria :)
So is there not a genetic test for hEDS? My doc is sending me to a geneticist but thinks I have hypermobile type 🤷♀️
There's no genetic test for hEDS, unfortunately, but there's one for the other 12 types. However, there's an extensive clinical test for the diagnosis of hEDS. I think you def need to be clinically evaluated for hEDS, but then if you can get genetic testing for the other types, then that'd be great! I'm assuming the doc didn't make it clear but they are sending you to first see if you have one of the other types. That's just my guess though
They are finding out though that some of us with hEDS have the defect of the TNXB gene as well. I had found this great site for medical professionals and it shows TNXB as the gene for hEDS. Problem is genetic testing is so expensive that doctors don't want to do it for any of us, even if vEDS is suspected. So it's possible that TNXB is the gene, or one of them, for hEDS but since we aren't being tested for it, we can't find out.
A hEDS diagnosis is supposed to rule out the other 13 types (in theory), and genetic testing is not standard protocol for doctors or insurance companies.
Thankfully The Ehlers-Danlos Society announced the HEDGE study this year which is collecting DNA from 1000 hEDS patients to try and identify a genetic marker. Participants have to join their Global Registry first to be selected.
www.ehlers-danlos.com/hedge/
I was clinically diagnosed with hEDS by a geneticist, but they didn't run a full genetic EDS panel until they found a large aortic aneurysm on my first echo. No TNXB mutation was found. My only "targeted mutation" is on COL12A1, which has only been associated with myopathic EDS at this point. My variant is not shared with any of the 6 families in the world diagnosed with mEDS, and my symptoms are not a great match with those 6 representatives. So my mutation just floats in a government database with 100 others waiting to be researched. My removed ascending aorta sits in a research tissue bank as well. I'm still labeled with hEDS in the meantime.
I am thrilled that there is finally some funding/research, but I am concerned hEDS has become a "kitchen sink diagnosis" of connective tissue disorders, and results will be blurred by people who actually have one of the other 13 types, some who do not have EDS at all, and some who have novel form(s) of EDS. A second aneurysm was found in my brain 6 months after the open heart surgery to repair the aortic aneurysm. Nobody can confirm or deny that my vascular complications are just extraordinarily bad luck for a young hEDS patient, or if a more sinister pathology is occurring. You combine in other diseases known to cause similar symptoms/damage like late-stage Lyme Disease, which I've also battled, and things becomes even more muddled.
Waiting for genetic testing because I have varying traits that aren't really explained by hEDS which is what I was originally told I have, my mum definitely has EDS, my grandmother we think had it and we think my aunt has it too with her needing knee replacements young, but none of them ever had genetic testing. I'm also fat which makes it harder to see some things that were more obvious when I was a kid. This video is really informative and helpful for me to be able to list down some traits that I didnt realise were EDS related rather than another of my conditons, my rheumatologist basically told me they don't deal with EDS so I have to go to a specialist center and there are only 2 sort of near me😅
I need surgery for my endometriosis and aside from being fat, the issues with eds can cause big problems with surgery so its all a waiting game 🫠
Can you go more into the blader issues that can come with hEDS?
Sorry i forgot to tgank you for the infomation, I had to ask this now before i forgot again. I've been looking for infomation on blader issues with eds since I've been having some problems. At first we thought it was just UTIs but when i when to the doctor about it, there was no bacteria in the sample they tested and i was told that it could have been inflammation of the blader. The doctor i went to also looked at the back of my legs looking for purple dots which can be a sign if eds.
@@mysticsnow5290 from my understanding, aside from inflammation, it can cause overstretching, which can lead to interstitial cystitis.
@@Softening.into.His.Glory. thank you for the infomation, i really appreciate it.
Hey Jade! I don't really know that much about EDS and bladder issues, other than the fact that I KNOW FOR A FACT I pee way more than anyone else does lol. but i can point you to some resources that might be helpful. Check these out!
hypermobility.org/help-advice/the-bladder-pelvic-floor/
www.ncbi.nlm.nih.gov/pmc/articles/PMC3545343/
@@IzzyKDNA thank you so much. I just got back from the EP and i have some posture exercises and some exercises to help with my shoulders. I'll be going every week for more exercises. In a couple hours i have my pediatrician appointment and I'll be talking to him about my bladder issues and my joints.
I might be wrong but isn't it that Joi hypermobility disorder is common but actual HEDS is not common?
Asymptomatic Joint Hypermobility is very common, but it causes no issues whatsoever. Generalized-HSD is not very common but more common than hEDS and causes issues but is not hEDS. hEDS is the most rare and affects many systems, not just the joints. :)
Hey your missing a couple other types of EDS for a example cvEDS
i just wanted to talk about these four in this video! I know there are 13 types but I picked these out for this specific video
So am I to understand that if I were to inherit EDS from my mother or father it would be the same kind
yep!
I know you aren’t a doctor, but if I have pots, mast cell disorder, congenital abnormalities that required surgery, stretchy skin and daily subluxations, but only have a 5/9 on the Beighton scale, what are your thoughts? Could it be eds?
Hey! So the about the beighton score, you actually only need a 5/9 to pass. I only have a 5/9. But yeah, wow, if you have all of this then I really really REALLY think you need to be evaluated for EDS. Obviously everything you said here isn't the full criteria, but just from hearing this, I do think it sounds like EDS. Please find a doc and keep me updated!
Izzy Kornblau thanks for all your help!
I have hEDS
Can heds make your hair fall out?
not that i know of! but i could be wrong. I know some people with gastroparesis lose their hair because of malnutrition
Izzy Kornblau thanks
I have heds
You are beautiful 💓
Iam a hypper mobility patient from India. I have joint dislocations( hip,jaw,shoulder).. gastritis mussle and joint pain. I can't walk because of pain. Our doctor said, here's no treatment,only physiotherapy can helpful.l can't know English very well because I am a Malayalee from Kerala (India).can you help me...
Oh no, im sorry to hear this. Are you able to use a wheelchair to help with your joint pain? Physiotherapy can definitely help to stabilize the joints. Pain management is a big part of the disease. I take duloxetine, but there are many other medications that can be very helpful for pain that have relatively few or no side effects. I also use a heating pad, hot water bottle and ice for the pain. using a foam roller to roll out my muscles that hurt can help too. I'm wishing you the best, and hopefully these things can be helpful.
Thanks my dear.....
Ola. Guapa 😘
I’m just extremely flexible, like I can spin my neck 180 and lunge real far, but I don’t have any pain
In Jesus name be healed