EDS Stuff No One Talks About | Ehlers Danlos Syndrome 

⚠️ These things often go alongside hEDS, but they are not indicative of hEDS unless you also meet the ‘2017 hEDS criteria.’ See a doctor if you are concerned. ⚠️

I could forgive doctors for not knowing, but when they then go on to not believe you, it’s actually the worst. Not knowing is easier to fix.

The fatigue is so real!

The jaw popping/clicking thing when eating 😩😩 hate it

I can relate to a lot of these. As for the fatigue, I was at a neurologist being tested for MS and they left the room. I knew they were googling Ehlers-Danlos. When she came back in the first words out of her mouth after telling me looked up EDS was that I must be so tired all the time. She immediately connected that if it affected collagen it would cause problems everywhere, not the least being that our muscles would be exhausted trying to keep our joints in place. It was the first time a doctor recognized the depth of my fatigue and after the appointment I just sobbed in the car.

I think chronic pain and fatigue is very common in EDS. I think we just deal with is and not talk about it that much because it's just our lives and what were used to. I also don't think a lot of doctors are able to connect the dots with EDS comorbidities even if they're aware.

Yessss! In my experience- most Doctors just straight up think it’s stretchy skin sand that’s it.

I’m glad you brought up the bowel problems! I’m soon to be tested for EDS. I’ve had to do enemas every other day for years. Everything works fine until the very end. Just doesn’t come out. Everything just backs up from a certain point. I’ve gone to mayo clinic with the best docs and they haven’t got a clue. This totally makes sense now!

poor proprioception, defo. Getting through a door instead of walking into the door frame is a win! I am forever getting a hood or sleeve stuck in door handles. and tripping over like edges of carpet or tiles anything. I can put my back out going to the toilet! Sprain a wrist picking up a cup of tea

Wow... EDS really involves a lot of body functions... thank you for sharing this information !

Thankyou for sharing this information. So many Drs are ignorant about EDS , it is very frustrating & sad. Pain control is so important, we need to stay as active as possible 🤗

Yes,omg EDS effects so much,we are warriors,thats for sure!!

Fellow fatigue club member right here :)

I bump into things so often that I don’t notice until someone asks if I’m okay

I am in my forties and listening to you while crying my eyeshot here. For the first time someone talks about the symptoms I have lived with for soooo long and always been told that it was psychological. Thank you!

When I told my new family doctor i had EDS he said "oh that means you're bendy, doesn't it?"!! I have everything you mentioned (except for full dislocations, I sublux) and more, it's crazy. EDS UK is a brilliant support group, and I think there's a similar one in America too. Keep up the good work and take care of yourself. Best wishes

Wow! Thanks for making these videos!! My daughter is 14 and was just diagnosed with EDS a few weeks ago…. My daughter is always cold!!! We live in Florida and traveled to Mexico last week…. She had a huge jacket on while we were laying out in the sun on the beach! I was just floored! She is always tired, hands cramp up when she writes, chronic subluxations and dislocations… 12 dislocations in her right shoulder in 2 months. She just started PT but had a delay from all the dizziness and headaches and a few falls. The salt tablets and zofran seem to be helping so hopefully she can resume her PT. We live in the states and it’s very hard to get funding and testing here as well so I’m sure we won’t go the genetic testing route…. I can clearly see she has EDS anyways!!! I just hope her shoulder heals up! I keep taping her shoulder and she has a special brace but still that shoulder keeps popping out! Have you ever had the injections that help the joints strengthen? Prolotherapy? I think that’s where we are headed next?!?!? Not sure! This is so new to us and kind of overwhelming. Any advice is greatly appreciated and I appreciate your videos as well!!! It’s helping me learn so much!! Thank you!!

OMG thank you for sharing this. It brought tears to my eyes knowing all my strange and seemingly random symptoms are actually caused by the same thing! I have a diagnosis of hypermobility syndrome and waiting to see an EDS specialist

Thank you so much for talking about these problems! I’m from the Netherlands and I did get genetic testing, but just the basics and not the entire panel. I also suffer from extreme fatigue, have bladder problems, I’m getting surgery in just over a week for the placement of an ileostomy because my bowel is so badly effected. There are also barely any doctors that know about POTS, Dysautonomia, MCAS and more and there are only 2 rehab doctors that specialise in EDS in the entire country… I also think that stomach problems are not talked about enough (I have quite severe Gastroparesis) there is also just one hospital and 2 doctors in the Netherlands that specialises in stomach and bowel dysmotility….

I have hypermobility spectrum disorder (getting testing for EDS soon though) and experience almost all these. Its so nice to hear about this stuff from someone I can relate to. I have pretty significant fatigue problems but was told it wasn't ME/CFS since I don't get the post exterional malaise severely.

Besides hypermobility, my first major symptom that started my journey going to the doctor to find out what was wrong was nocturia (overactive bladder at night). It took 7 years, countless tests and urologists, physical therapy, and so many medications before I found something that reduced symptoms. To this day my urologists tell me it’s all in my head. Luckily I was able to get my EDS diagnosis in 2022, so I’ll once again be on the search for a urologist who is familiar with EDS and knows how to work with me.

I loved this video, it was so honest. Sometimes it's nice to hear your own experiences validated, even if I wish others didn't have to experience this pain in the first place!

My catchphrase is “I’m so tired” 😂

i dont have EDS, I've been diagnosed with fibromyalgia, but I relate to all of these other than the dislocations! the bowel/bladder stuff is totally something that took me a long time to realise was affecting me so badly.

I have terrible fatigue all the time! I also have bladder and bowel issues and stomach issues! They aren't talked about often, your right! I'd love to know why it's so disabling!

I have hEDS and suffered severe fatigue. I was also diagnosed with Vitamin B12 deficiency. With that corrected my fatigue is much improved.

i could relate to all of these. i took baseball practice when I was 7 years old and it was terrible. I couldn't catch the ball and one time the ball hit me right on my head. I also have a hard time discerning right from left. Dancing or anything that requires full body movement is hard for me unless there is a mirror in front of me so that I can see how my body is moving. Otherwise I can't even make my body move the way someone like an instructor is telling me to. I dreaded gym class in high school. Relatives never understood how I passed difficult classes but failed gym. And that's because I wouldn't attend or I wouldn't want to participate. I would get embarrassed in school when I had to get up from my chair and walk because when I would get up and walk my tailbone would make a loud popping noise. Also simply just having to adjust my joints in class caused others to react. But if I didn't I would be in so much pain.

Has anybody noticed more and more symptoms the older you get?

It's the same where I am in Canada. If you meet the criteria for HEDS, unless you have multiple hernias or prolapses, aortic root dilation, mitral valve prolapse, or extremely fragile skin, they won't accept your referral for genetic testing.

I watched a gmvt interview and decided to mention it to my GP. He initially laughed at me, although in good nature he advised me not to watch daytime TV... a bit embarrassed, i explained why I had thought it might be eds. I said "no harm in asking i suppose" 😂 I came home and found Izzy's channel then I was convinced so decided to ask again on my next visit. I got a call from them the next day to go back for another appointment. Thankfully after I left, he read up realised I was actually on to something and wrote a referral. I'm really very greatfull for you sharing your knowledge. There is so little information available, hearing about a lived experience is really, so very helpful to know and understand myself and I'm sure it will help many more people too. Thank You 💜 Hope You're able to stay safe in the current situation 💗

I was diagnosed with ME before I got my EDS and POTS diagnosis and I personally believe this is down to lack of knowledge from doctors It's still down on my records that I have ME However what I've learnt is both EDS and POTS cause extreme fatigue just like what is described with ME patients EDS from hypermobility, because of our loose joints, our muscles become overworked as they now need to help support rather than just do their job which is movement, and this is why strengthening exercises are so important. POT'S causes fatigue through poor circulation, parts of our body don't get the fresh blood because of pooling. And because our heart rate is so up and down throughout the day. I'm exhausted just thinking about that one 😂 Some of this maybe really obvious, but this is my understanding Hope it helps x

I have been chronically fatigued and constipated my entire life. These were actually the biggest issues I had almost 2 years ago when I first found I might have EDS. I remember my mom giving me suppositories in my sleep as a kid, feeding me lots of broccoli, and giving me a warm bath all to help me. I also remember laying down and closing my eyes to imagine I was playing with my toys because I was too tired to actually play with them. My mom had me in the Dr all the time trying to figure out what was wrong with me. I was always clumsy and jokingly called Grace, even now. And I haven’t even finished the video yet. Seems that’s the way it always is for me - I relate to what you’re saying so much that I have to comment before it’s over. lol! Oh, also wanted to mention that I don’t have any other diagnoses except all GI ones, including gastroparesis, so I don’t know which is related to my chronic fatigue. I’m just finally starting my journey with my EDS diagnosis in June.

Omg! I haven’t been diagnosed, but I’m almost 100% sure I have EDS, MCAS, pots etc....my hands/feet/fave have been flushing when I eat or drink alcohol for about 5 yrs and my doctor recommended a low histamine diet, which has worked. In researching the diet, I found out that MCAS & pots is almost hand in hand with histamine intolerance. I also recently saw another video on RU-vid about EDS and MCAS being related, and I have almost everything your talking about. Since a young age I had stomach problems, brain fog, hard time falling asleep, sleeping through alarms, used to sleep 12 hrs/day in middle/high school. And now it’s all making sense! I truly believe the root cause is EDH and genetic issues...but unfortunately over the years, so many other things have come into play. My shoulders pop out constantly and hurt, I can’t sleep on my sides anymore, and the first time it happened was in 6th grade. I have hypermobility in my thumb, arms etc., my knees crack every time I walk or shift weight, my shoulders also crack, my neck cracks easily, I was also afraid of losing my job because of over sleeping and messing up on stuff, and was diagnosed with ADD and take Adderall for 10+ years. Before that, I had absolutely zero energy, I was constantly tired, slept so long, tired after every meal, tired after waking in the morning, and the meds are the only things that’s helped me function, but I don’t wanna be on them forever....I also only used to poo once a WEEK before Adderall, and retained fluids, and I thought it was normal until the meds got me on a normal poo schedule. I felt so much better, but now after 10 years my body is attacking itself (MCAS) and I’m worried it’s the meds, also scared to go back to how I used to be. Anyways thank you for speaking out! NO the sleepiness and bowel issues are not uncommon! Those are the two main things that began first for me from childhood! Hopefully a genetic test will help, but even so, I hope there’s a way to help fix it or make us less tired and less bowel issues 🥺

Great video lovely. I can relate to the genetic testing thing. I have symptoms/signs of Marfans and some symptoms related to other types of EDS, but because I fit the hEDS criteria I haven't been offered genetic testing. I can also massively relate to the fatigue. I was originally diagnosed with M.E, but now with other diagnoses I'm not sure if the fatigue is caused by them or if it's still M.E. But it's one of my most debilitating symptoms. Can relate to everything you've said - bowel and bladder problems are so poorly understood by a lot of doctors, which is such a shame. And there definitely needs to be better education generally - EDS UK do a lot of work on this and created a toolkit for GP's recently. But need consultants/hospital doctors etc to have the knowledge too xx

THANK YOU, for making all of these videos! It is so hard to talk about. I have EDS and ME and Fibromyalgia, most likely POTS and MSAD. But off course, in the north of Sweden where I live no doctor knows what POTS and MSAD is,and it is impossible to get a doctor to check. I also have Asthma, a broken bladder, Migraines, severe allergic issues despite medecines. And so much more body issues. I stop breathing every time I sleep. I could go on and on for a long time. My body temperature is crazy every day. I get very high fever, or more common on a regular basis, too low body temperature. I get episodes where it is 28 degrees in my bedroom, I have a wool sweater on, pants, a night dress, wristwarmers in wool, socks in wool and a wool blanket, despite of all that I am crazy ice cold and only have a 34 degrees temperature! !

Actually a LOT of people can't get genetic testing in the United States either because of insurance problems. You definitely are not alone in that. Most of the time insurance refuses to pay for genetic testing because it is considered an "investigative" test. Some genetic conditions have specific medications to treat them, but for EDS you have to just treat the issues individually as they arise. So from the insurance's perspective genetic tests won't change patients' treatment and therefore it is an unnecessary expense. In some cases if one has severe vascular problems, especially if the patient is a child, insurance would be more likely to pay. But generally insurance fights you and the doctor every step of the way. In the ideal scenario, geneticists give the tentative clinical diagnosis of hEDS and then try to obtain insurance approval. If you can't get approval you just keep the hEDS diagnosis. If you can get approval and get the testing done your diagnosis will change or remain accordingly. geneticists My point is, social media may make it seem like lots of Americans are being tested but this is a big country. The percentage of patients who actually have access to testing is tiny. Most social media influencers, even in the chronic illness community, come from a place of privilege in the first place. Having exceptional insurance that pays for testing is a privilege, paying outside of insurance is a privilege, having friends and family who can help you fundraise is a privilege. EDS testing needs to be more available and standard worldwide. Hopefully this will happen as research continues and more genetic variants are identified. ------- I probably have one of the best insurance plans in my state and I was refused approval for testing on the grounds that it was "investigative", even with classical and quite a few vascular manifestations. Luckily, I was tested through the company Invitae which at least at the time had a policy that if insurance refused to pay then the patient paid a flat fee of around $200. This may have been an agreement with my specific hospital, I'm not sure. I was very lucky.

Excellent video! And I can relate to ALL that you bring up- I want to comment more when I’m more awake.

I've always worn out easily. I'm always tired and can always sleep. I have hEDS and have almost all of the things you talk about in this video

I have been sick for many months and condition is undiagnosed or misdiagnosed I have weird symptoms and after using alot different medications caused me new symptoms and they are undiagnosed. My life devastated by my illness. lost job lost friends lost money almost losing everything slowly. After watching your videos it gave me so much emotional energy keep making these videos Really appreciate you ✌️

Oh, and I have been constipated my whole life! And I have horrible episodes with a stomach pain so severe I pass out when I get as I call it, a stomach fit, with diarrhea. But on an every day basis, I am constipated, often for 7-11 days or more even.

Thank you for this . I have this ... so me . My ribs are my worst and my SI joint . And when u can’t put them back it’s frustrating. I also haven’t been tested too . Thank you for sharing the issues you had with Pilates and physical therapy.

Hiya my mum's.suspecting I have EDS and watching your videos has helped us want a diagnosis, I also have tourettes which is rlly hard especially the other day it threw me to the floor and all I did was land not even that hard on my knee and it completely subluxed and we went to hospital and the amount of time my pelvis subluxed is unreal

The pain makes me so sleepy! I hate it in always tired and needing to sit or lay down

OMG not being able to lie/sit straight on command is a thing?? It's not just me?!?! Mind blown...😳

Great video and yes i deal with many of these different things like fatigue , temperature issues and many of the other things . I wish doctors had better knowledge

I found that too little magnesium can cause both constipation and diarrhoea cyclically. It was found potassium deficiency was causing my urinary retention. It can also cause tachycardia and short P-Q Interval in heartbeat.

ive been diagnosed with fibromyalgia and autism, but ive been looking into eds recently. i have nearly all of the symptoms but the dislocations and i plan to getting to the doctor asap to see a rheumatologist because my pain has only been increasing and ive always had undiagnosed gi issues which are only worsening . i take cymbalta for the pain, which helps with my joint pain, but the muscle pain is still there, and my daily pain is in the 5-7 range. doctors r blown away by my pain level everytime they ask because im so used to being in constant pain. i also have quite atrophied muscles and i struggle with getting exercise without hurting myself, throwing up, or being in pain too extreme for me to manage alone.

If you can look into a specialty dentist to mold a mouth guard specifically for you! It took multiple adjustments but it aligns my jaw when I sleep and now it rarely subluxes and clicks it’s amazing!!

Found your channel and thank you so much for these videos. I just found out I wasnt emptying my bladder and have to use catheters 4x a day. I only found out last year I had hEDS but I have crossover symptoms of multiple other types. Channels like yours and izzy's have helped me advocate more for myself and understand what's happening to my body more ❤

Hi, I live in South Africa and we don't even have the genetic test here, I was officially clinically diagnosed with hEDS in March 2021 and after a lot of blood work only to be told that they can't do the genetic test in South Africa because they don't have the test here. Thank you for this because I have related to a couple of these (like temperature regulation getting overheated and sick from it. My boss jokingly says my thermostat is broken) that I also did not realize that was part of EDS. I was 4 when I was diagnosed with a "Joint issue" that I got from my dad and it was left at that I am now 39. It has been such a validation for me because I can now link all of the medical issues that I have been dealing with since then back to EDS, as the saying goes all roads lead to Rome well, all of my medical illnesses and struggles that I have had leads back to EDS.

Very informative video. Keep up the good work. You're such inspiration to so many people.

I have EDS and have being diagnosed with cfs as well. I can't tolerate heat either, having a hot bath makes me feel really ill. Do you often have low iron? I find myself having to have a course of iron from the Gp quite often, and wondered if it was an EDS thing or a poor diet thing.

What?!?! Poor proprioception can be tied to EDS?! Wild. I'm currently laying in bed and when you mentioned it I realized I'm laying in a curve. I always assumed it was due to my sensory disorder.

Why this is so me…. I’m recovering from a shoulder injury… a fricking dislocation caused by me just watching tv in a awkward position….

I’m diagnosed with HEDS, Pots, and Chronic fatigue. Recently my hands have been going down hill so I’m constantly dropping everything. My doctors seem so clueless about it. It’s so difficult.

Thank you for talking about all of this. I hope you're doing well during all of this. I hope you're at a manageable state.

I'm new to your channel. You are so knowledgable! You should go into medicine. Maybe you already have.

Hi, new here. My daughter was diagnosed with hEDS yesterday. We weren’t too sure how she got it but I just watched your video and now I think she got it from me. My jaw clicked so bad at the dentist once he looked on the floor to see what he dropped. I now have a mouth guard to keep my jaw aligned during the night, my jaw is a lot better now. But I have other symptoms too they are but much milder than my daughter’s.

I do hope that your videos will help to spread knowledge about EDS.

My daughter was just diagnosed too...so it’s me, my dad and two kids..my dad has passed now, but we make up a massive list of symptoms, the most difference being my daughter, 25 never had a big weight gain but has always had mass amounts of stretch marks. Oh, but I can sure jump aboard the temp regulation, bladder incontinence, fatigue...bruising! I have dysautonomia and MCAS, Josie my daughter perhaps has MCAS, but we both had Hashimotos, lost thyroids, gallbladders, me: add uterus, ovaries, why haven’t I lost weight 🤷🏼‍♀️ oh well, we are the warriors.

I was lucky; I finally asked my Dr about it because a 3rd person asked if I have it. Turns out my Dr has a family member who has it, and she had a why did I not think of that moment as we were talking because my mom and at least 2 of my 3 sisters also have had a bunch of small things going on that could very much be explained by it.

I haven’t had genetic testing either, even though my son and maybe one grandson are affected

My 12 year old daughter and I both definitely suffer from fatigue along with hEDS and pots.

Super helpful, thank you so much Georgina. Your knowledge is helping so many of us!

I know you mentioned chronic fatigue being a thing you don't know if people with hEDS have but I do have it just thought to say so you know you aren't alone!

Oh my goodness, I went to Pilates classes for a year and did really well. But whenever I try to do it at home with a virtual class, I ALWAYS hurt myself! Now I know why! Poor proprioception!!

Pyridostigmine is emerging as a treatment option for gastroparesis and POTS in EDS patients.

I feeel like the amount of time we have been in hospital or can spot eds we are better docs the the real docs

My GP told me she was taught about EDS in medical school - but as it is a rare disease (although up to 1 in 5000 people have it), it means a GP is unlikely to have one patient or even several patients with EDS and like so many other rare conditions they forget about it. What I wish that GPs were more mindful of is: Yes, if you hear hoofbeats, think horses, not Zebras - but Zebras still exist. So if a patient comes in with say stomach troubles, they likely have IBS. But if they keep coming back with more and more issues, think: Is there anything which connects these? And if you can’t connect the issues, think connective tissues. Just like a headache is most likely just a headache - but it could in rare cases be a brain tumour. If the patient with the headache then comes in with dizzyness and visual problems, most GPs would eventually send them for an MRI. Why does the same not apply to EDS?

I live in the US and I was told that insurance wouldn't pay for genetic testing. I would have to pay out of pocket if I wanted it. I think most pay for testing.

America is not better.... My foster sister was diagnosed with eds but was denied testing because they didnt take her insurance. Things got really bad, she lost eyesight around 4 months, then mobility. She went into the er again and has been in over a week and now shes using a catheter. Its been really hard to support her, shes so tired of everything and feels like shes no longer a functioning human. Its really scary and I cant imagine what its like for her.

Same in the US . I have bladder and bowel problems

The UK may lack funding got genetic testing but in a way so does the USA because the cost of paying for genetic testing is beyond affordable for many of us and there are few doctors who will do referrals to geneticists since there are few geneticists around. My daughter has been a airing over three years to get into the one geneticist here

if I pull up my pants from the belt loop my thumb dislocates 😂 anytime I do something normal and something goes wrong I’m like really body, really?

I have been tired my 64 years of life,my daughter too,we both have hypermobility EDS. We have low blood pressure and cold.

I think in the United States we are able to get genetic testing done easier because most of us are on private health insurance (even though to see a genetics it can take years), and most states that offer Medicaid do not cover genetic testing. So basically, America’s health care system only cares about how much money they’re getting.

Just been diagnosed with heds and pots and I also have ms,my daughter and mother also have a lot of eds symptoms

I have some of those symptoms, like the clumsiness of properception - if I don't watch where I'm walking I'll trip over tree roots or sidewalk cracks. My gut is seriously messed up and if I eat the wrong thing I get constipated. Numerous food allergies and foods I can't eat yet I don't test positive to anything on IgE. Some of it does show up on IgG but not everything. I think I have MCAS as I react to lots of airborne fumes, especially stuff like perfume, air freshener and fumes from restaurants - sometimes 1000 feet away. And I sure have the temperature disregulation too! I can be sweating like crazy but my body temperature is 97 or 96 F. And I can be both too hot or shivering at the same room temperature. It doesn't make sense to me! One really weird thing is I can put my hands into hot water to do dishes but my body will start shivering?? And years ago I got bit on the hand by my cat, it got red and infected but I had zero pain!! All of my joints are hypermobile, even my toes. And I have autism too. As a kid I had thought everyone had elbows that bent backwards. My mother was constipated her whole life. Oh and I have celiac too..my doctor doesn't see any connection between my gut problems and my hypermobility..she just ignores my request to be diagnosed with hypermobility spectrum disorder. She loosely says I probably have ibs. I think I have low stomach acid...I can still do all the hypermobility tricks and I'm almost 50. Sometimes I have the fatigue, especially if I'm glutened. And my sleep is awful! About 4 hours a night..

Omg I pulled a muscle from yawning and didn’t even make that connection

Thank you for this video ♥️ The bladder issues mentionned on the title made click on the video. Hearing you talk about that made me cry because I don't feel so alone with this anymore. Ever since I was a child, I've had issue with my bladder, and it's getting worse and it makes me feel so bad about myself, but I still haven't found a doctor that could help with this specific problem 😭 I can't remember what it feels like to have a functioning bladder and not going to the bathroom 10 times in the space of an hour to maybe feel ok enough to go to sleep.😭 I guess the bowel problems do not help either, but at least they are somewhat manageable with a routine like you said ♥️ Also, having a passion for dance and being an absolute disaster with coordination and stuff... Not fun 😅 Also the sneezing/yawning thing and temperature regulation also spoke to me ^^ Sorry for the long comment, I just wanted to thank you for what you do and got a bit carried away ^^ Take care ♥️

Genetic testing is almost impossible in the US unless you are incapacitated or have many other conditions. I am not sure how people even get tested. I definitely have Chronic Fatigue and my jaw pops and clicks a lot. Doctors are still clueless as a whole.

My geneticist said I didn’t need a genetic test based purely on the fact I didn’t have the classic vEDS facial features and that was enough for him to proceed with the hEDS criteria. He also said the comorbidities I have should count but he couldn’t take my gastroparesis, IBS and POTS into account. The criteria was updated in 2017 after 20 years. It could be another 20 years 😬

Wow, I did not know this, very helpful information. I hope you are doing ok. I am sorry I have not been around.

I think the fatigue thing is because it takes more brain and muscle control to keep a body upright when it's so bendy.

Yes, yawning isn't fun and neither is chewing meat.

I’m pretty sure Medicaid in the US doesn’t cover genetic testing. I have Medicaid, and a lot of doctors don’t take that insurance.

I thought that fatigue and POTS were two of the most prevalent symptoms of EDS.

EDS UK has a GP Toolkit for doctors.

I have temperature regulation problems as well

Problem in the US too on accessing testing and geneticists. The research hospital in my state, the genetics department won't even see patients who suspect hEDS or cEDS. So my hEDS was diagnosed by a naturopathic doctor in their comprehensive pain clinic. She has agreed to order testing for me, as I have some indications of cEDS, but it keeps getting put off (I was diagnosed with EDS in 2018, still no testing). On ME, another one here with the pentad of EDS, POTS, ME, MCAD, and autoimmunity. On urinary issues, did you mention incontinence? Feels like that is fairly common although not as common as retention issues perhaps....

I was recently diagnosed and have been waiting for my referral to a genetic counselor here in the US. It's been over a week, but I don't know what's a normal wait time for this here. I went through my raw genetic data from an ancestry report and I have a lot of pathogenic genes for EDS classical and some other subtypes, but I won't know for sure until I speak to a pro and it sounds like it might be awhile.

I was diagnosed with hEDS; but I couldn't get vEDS testing, even though 3 of the 6 cousins on the EDS side of my family died unexpectedly of aneurysms.

I have hEDS but had to pay out of pocket for testing in the US. There wasn’t a genetics lab in my insurance network so they wouldn’t cover it. I did come up with a haploinsufficient mutation of the tnxb gene but my geneticist said that is for now still classified under hEDS. I also have bowel and bladder issues. My mutation is known to cause bladder reflux into the kidneys. I have to use pubic tapping to help pee often. I have issues telling when I have to pee. Fatigue is awful but I also have inappropriate sinus tachycardia which is a type of cardiac Dysautonomia and is common with Eds and causes fatigue. Often I feel like I’m being pulled into sleep and can’t possible resist it. I’ll also get very very antsy when I need to sleep. My temperature regulation is horrible. I get hot and ill from it so easily and faint or get very nauseous. I often wake up with my jaw stuck from laying on my side. Chewing gum has also gotten me stuck to the side so I avoid that now. I wasn’t diagnosed until after 30 and was told to exercise and get stronger my whole life.

I’m trying to get a diagnose for hEDS. But the doctors think that i dont have EDS beceause my skin isn’t super velvety and i don’t bruce super easly. But i’m verry flexible, subluxate my joints more than 70 times a day and sometimes dislocate, have problems with my stomac, my back, can’t regulate my body tempreture when i’m tired, i have a lot of weird allergy reactions on my skin, i will pass out when i take a hot bath, i have problems with my mucles every day, and i could go on and on with the problems i have. My question is: can you have heds without a super soft skin and bruising easly? My skin stretchy but just not so soft. My second question: do other people have problems with getting a right diagnose? I’v been to a lot of doctors and most of them dont believe me they think i’m a hypochondriac when i start talking about heds. But my problems affect my a lot. I cant work of go to school and i have lost a lot of friends beceause of my problems, i just can’t keep up with them. It’s not like i want to have heds, i just want some awnsers to avoid more problems in the future. I would really like to know how other people handle these problems, and maybe get in touch with people in the same situation, it’s kind of lonely knowing no one with the same kind of problems. And georgina, i really like your video’s, they are verry helpfull and it is so brave the way your talking about your problems😊

Dr: it’s not only to recognize EDS but what to do with it, what to check about symptoms. You talked about bladder not emptying completely: Isaid it to my doctor, he told me it’s age!

#relatable haha.. I have my ileostomy since july, and also my bladder stoma. I hate the bladderspasms...

Fatigue

Wow I have so many of these things and I had no idea these were eds things. Also you could never have dislocated a joint and still have eds

Urinary incontinence I solved with an interstem.

Any issues with swallowing? Also, I can't find a link to the wrist supports you mentioned in another video ~ can you share? Thank you!