Thank you for taking a dive with me into what EDS is-and my story with it! If you or anyone you know has EDS, I’d love to know if you’ve experienced anything similar in your journey? If you’re still looking for answers, hang in there! I’m thinking of you. 💕 Xxx
It is absolutely unbelievable doctors kept telling you it's depression and anxiety and that it took so long until someone suggested EDS! Yr symptoms can even be easily seen and measured! Makes you realise medical gaslighting really IS a thing. [Part of the gaslighting consequences themselves of course being that sooner or later you yrself start questioning if it's ALL in yr head since the people who are supposed to be in the know keeps telling you so even when you know that's not the case] Once again thanks for an amazing & educating & positive channel!
A very accurate account of your health journey hun. Your use of the fidget prop captured the action of collagen in EDS very well. Well done putting this together 💖💖💖💖
Thank you so much for sharing all this Stela, your channel is great and I really appreciate it ❤ I think I might have EDS, thankfully I don't have pain other than back pain and achy joints sometimes, but I have really severe fatigue and weakness. It's really helpful hearing your story and the awful process of misdiagnosis. Sending much love and positivity for your health ❤
Wow Stela how well you have explained all this through your videos I am getting to know you and admiring you more and more I appreciate you very much sister 🤗💫✨🙏💎
Thank you so much aIm on this journey a little different but just told its eds.dismissedas anxiety allergies to foods depression hypochondriac,degenerative bone disease ,its a shame women dont get treated as human beings .Keep going girl you got it!keep fighting!
I stumbled across your channel a few years back and had no idea that this applied to me. My identical twin sister was diagnosed with hEDS in 2014. She told me about it but for some reason I didn't listen. A few years later I developed POTS and then saw the association with Hypermobility. So I went to a rheumatologist in NHS. She however didn't believe that my twin sister had been diagnosed and she stated that I wasn't even hypermobile. So I printed out my sisters diagnosis letters (she was diagnosed by professor Mathis and professor Rodney Grahame) and I took this to the hypermobility clinic in London where I was diagnosed with hEDS. I was in fact hypermobile and scored 7/9. I wish the NHS knew more about EDS and that they would take the patients word. Gaslighting is so very real in the NHS. Thank you for spreading awareness! Xxx
Oh yes! Regarding vEDS I was worried we might have that as we have some of the facial features and family history of strokes etc. But my consultant noted down my facial features (such as lobeless ears etc) but said that you can have clinical signs of vascular EDS but not necessarily have vEDS. So I'm pretty confident that I don't have it although I pass some of that criteria! Xxx
Horrible the gaslighting. Always pushed to do PT which made everything worse and more painful. Migraines, headaches EVERY day even w treatment. I always felt i was different and sure enough!! It's wonderful you're sharing an of this for people who don't know. The chronic fatigue and exhaustion is horrible. Doesn't matter how much i sleep i still am not rested. Anxiety and depression goes w EDS. I was also tested for Lyme and it was positive test. Put on doxy too. Nothing helped. That Dr at the time kind of gas lit me, pain Dr. Almost 25 yrs later this Dr now treats people w EDS. Idk where else to go yet idk if i want to go there because of my experience yrs ago. Why didn't they know then!! My gland is always swollen but told nothing wrong. Idk where to go anymore... I'm exhausted at the age of 53. I'm passed due for lower back ablations. I read recently about the newest spider questionnaire
Thank you for this. I got diagnosed with HSD at 18 but I believe I have H-EDS. I'm going back to the GP today and going to try and advocate for myself and get some help.
I'm pretty sure this is what myn8 year old son has. When he was walking at 9 months his legs would bow (he didn't have rickets and was getting enough vitamins) he also gets really achey joints and is so very clumsy. When he wakes up he is sore and has a bad neck every time even with almost these specialised mattresses and pillows. He is very bendy, not agile at all but bendy. He can do the finger things (although all of his fingers can touch the top of his hand!) and it's his party trick! He gets sore feet and ankles so easily for a 8 year old and if he falls he hurts for such a long time afterwards. I want to make sure he hasn't got this because knowing the NHS they will just say he's depressed or overweight. I have an undiagnosed autoimmune system (NHS telling me my chronic pain and fatigue is all in my head) we are currently in the process of getting private health care so I'm hoping if he does have EDS we will be able to catch it early before he has to go through all the awful stuff you had to and misdiagnosis. I hope it goes better than all the stuff you had to go through!
One last thing I went through the police Academy years ago and couldn’t become a police officer because I couldn’t pass the physical agility test. Part of the test was doing 40 push-ups in two minutes. And no matter how hard I worked and how much weight I lifted, and how much I tried I still couldn’t do those push-ups because my muscles just wouldn’tengage it was too loose. I think the hypermobility component was part of that. My auto immune diseases and issues with organs all match Elder Dan Anders I swear this video makes the biggest difference to me. Thank you.
It’s looking like I have hypermobility other Danlos because my intestines are not working correctly. I also have sarcoidosis. I also pass all of the tests for Ellers Dan. Lots and lots of other things but this video has helped me a lot because I have a lot of the same stuff you do.
Wow that was so informative 🤯 i had no idea! Gosh i didn’t know that about your grandfather that’s so sad 😞. You’re amazing and thank you for sharing your journey 💕💕 love you lots! So glad you have your hubs/your rock- he’s amazing 👏
Aww thank you for watching and for saying that babe! I really love and appreciate you. 💕 My hubs is seriously the best. Yes, so wild about my grandfather. But hopefully I’ll get more tests done soon and get more answers along the way. Love you lots! 💕
My wrists are very floppy as well. I had the same extra skin on my back and my arms I have problems with where my neck connects to my skull and have had sciatica and had surgeries for it and now I have a device in my back. this is all so familiar it’s crazy.
I am so normal and of good skin joints etc, like perfect. then I developed all around all joints pain, after loss of wisdom tooth (year later). what is it? I am not like you at all, I am small type and very stiff (so worst at yoga). Again these fingers and feet do not matter as everyone has hands, feet like yours (I checked my foot and it is same) so your feet are normal. My fingers can bend more than yours as I am small (small people's fingers are softer than tall ones), but thumb not as much as yours (because yours is long so can go more to the wrist way due to larger bone vs mine too small). I was told pain is fibromyalgia as it is not normal to have pain around all normal joints. But what if it was lupus that damaged your joints so they lost collagen and started to dislocate? What if I have this too, and later my joints will do same just because it might be lupus in fact? My joints are so good like perfection, never any problems before.
So happy to have found your videos Stela! Thank you for sharing your journey. Every single one of us has such a valuable story, clues along the way in our mysterious oddities and ill health and misdiagnoses along the way. Thank you for spending time bringing awareness for the not yet diagnosed and companionship for those who are and so identify with your history. I was sent to the geneticist finally 4 years ago. Now it all makes sense. ❤ 61 yr old zebra
yes you are true one with heds 1 in 5000 as its not normal to dislocate anything. but people withhout that claim to have heds too (normal people), so it is confusing as soon everyone will want heds and not fibromyalgia (old fashioned). how to know who is true and who is not? as everyone claims to be heds and they tell to others you have heds if you have pain. then others think they do have too. only dislocation should be heds as marker not other small things that everyone has.
Thank you for sharing your story with me. I, too have EDS. I have the Classical subtype. And many other co- morbities that comes from it. My joints, ligaments and muscles as well as my skin is affected by my EDS and so is my eyes . It took me turning 48 years to get my Dx. My Neurologist is the one who Dx me. My type shares the same genetic mutation with Osteogenesis, which my family has and EDS runs through my family, too. My niece has EDS. I’m prone to Bronchitis and I think it’s because EDS has ruined my immune system. It’s NOT all in our heads, it’s in our Connective Tissues! Doctors now and days are quite often quacks!
Thanks for sharing! This is so much like me. The worst for me is that I am often not believed. By collegues, as I am a health care professional. So my health has deteriorated a lot, especially my mobility. So I can walk like 100 meters, and then I am very tired. So I am thinking of getting my first wheelchair. My aims: Being less tired. Being less in pain.
Sorry, removed my initial comment because I did what I've done other times occasionally and commented something before getting farther in the video and I've saw that you mentioned what I mentioned in my other comments so I deleted it
@@stelasulzdorfI hate seeing younger people doing things to show what is EDS. Like the "tricks", because it will only make it worse when get older. I've learned that the hard way with my fingers. I now need thumb fusion because it "was fun" when I was young to show tricks
![[Full Episode] Invisible Illnesses & Ehlers Danlos Syndrome with Meghan O'Rourke | I Weigh EP 157](/img/n.gif)
Thank you for taking a dive with me into what EDS is-and my story with it!
If you or anyone you know has EDS, I’d love to know if you’ve experienced anything similar in your journey?
If you’re still looking for answers, hang in there! I’m thinking of you. 💕 Xxx
You are doing amazing work while battling your own illness, well done hun💗💗💖💖💖💖
I couldn’t do any of it without you!! Love you 😍
It is absolutely unbelievable doctors kept telling you it's depression and anxiety and that it took so long until someone suggested EDS! Yr symptoms can even be easily seen and measured! Makes you realise medical gaslighting really IS a thing. [Part of the gaslighting consequences themselves of course being that sooner or later you yrself start questioning if it's ALL in yr head since the people who are supposed to be in the know keeps telling you so even when you know that's not the case]
Once again thanks for an amazing & educating & positive channel!
A very accurate account of your health journey hun. Your use of the fidget prop captured the action of collagen in EDS very well. Well done putting this together 💖💖💖💖
Thank you for being here for me every step of the way! I’m glad the fidget toy helped with the explanation. Love you so much!! Xxx
Thank you so much for sharing all this Stela, your channel is great and I really appreciate it ❤ I think I might have EDS, thankfully I don't have pain other than back pain and achy joints sometimes, but I have really severe fatigue and weakness. It's really helpful hearing your story and the awful process of misdiagnosis. Sending much love and positivity for your health ❤
Wow Stela how well you have explained all this through your videos I am getting to know you and admiring you more and more I appreciate you very much sister 🤗💫✨🙏💎
Thank you so much for watching, my dear! That truly means so much to me! Xxx 💕
Thank you so much aIm on this journey a little different but just told its eds.dismissedas anxiety allergies to foods depression hypochondriac,degenerative bone disease ,its a shame women dont get treated as human beings .Keep going girl you got it!keep fighting!
I stumbled across your channel a few years back and had no idea that this applied to me. My identical twin sister was diagnosed with hEDS in 2014. She told me about it but for some reason I didn't listen. A few years later I developed POTS and then saw the association with Hypermobility. So I went to a rheumatologist in NHS. She however didn't believe that my twin sister had been diagnosed and she stated that I wasn't even hypermobile. So I printed out my sisters diagnosis letters (she was diagnosed by professor Mathis and professor Rodney Grahame) and I took this to the hypermobility clinic in London where I was diagnosed with hEDS. I was in fact hypermobile and scored 7/9. I wish the NHS knew more about EDS and that they would take the patients word. Gaslighting is so very real in the NHS. Thank you for spreading awareness! Xxx
Oh yes! Regarding vEDS I was worried we might have that as we have some of the facial features and family history of strokes etc. But my consultant noted down my facial features (such as lobeless ears etc) but said that you can have clinical signs of vascular EDS but not necessarily have vEDS. So I'm pretty confident that I don't have it although I pass some of that criteria! Xxx
Horrible the gaslighting. Always pushed to do PT which made everything worse and more painful. Migraines, headaches EVERY day even w treatment. I always felt i was different and sure enough!!
It's wonderful you're sharing an of this for people who don't know. The chronic fatigue and exhaustion is horrible. Doesn't matter how much i sleep i still am not rested. Anxiety and depression goes w EDS. I was also tested for Lyme and it was positive test. Put on doxy too. Nothing helped. That Dr at the time kind of gas lit me, pain Dr. Almost 25 yrs later this Dr now treats people w EDS. Idk where else to go yet idk if i want to go there because of my experience yrs ago. Why didn't they know then!! My gland is always swollen but told nothing wrong. Idk where to go anymore... I'm exhausted at the age of 53. I'm passed due for lower back ablations. I read recently about the newest spider questionnaire
Thank you for this video, it taught me so much!!!\
Thank you for this. I got diagnosed with HSD at 18 but I believe I have H-EDS. I'm going back to the GP today and going to try and advocate for myself and get some help.
I'm pretty sure this is what myn8 year old son has. When he was walking at 9 months his legs would bow (he didn't have rickets and was getting enough vitamins) he also gets really achey joints and is so very clumsy. When he wakes up he is sore and has a bad neck every time even with almost these specialised mattresses and pillows. He is very bendy, not agile at all but bendy. He can do the finger things (although all of his fingers can touch the top of his hand!) and it's his party trick! He gets sore feet and ankles so easily for a 8 year old and if he falls he hurts for such a long time afterwards. I want to make sure he hasn't got this because knowing the NHS they will just say he's depressed or overweight. I have an undiagnosed autoimmune system (NHS telling me my chronic pain and fatigue is all in my head) we are currently in the process of getting private health care so I'm hoping if he does have EDS we will be able to catch it early before he has to go through all the awful stuff you had to and misdiagnosis. I hope it goes better than all the stuff you had to go through!
One last thing I went through the police Academy years ago and couldn’t become a police officer because I couldn’t pass the physical agility test. Part of the test was doing 40 push-ups in two minutes. And no matter how hard I worked and how much weight I lifted, and how much I tried I still couldn’t do those push-ups because my muscles just wouldn’tengage it was too loose. I think the hypermobility component was part of that. My auto immune diseases and issues with organs all match Elder Dan Anders I swear this video makes the biggest difference to me. Thank you.
21:30 I think Lyme disease is possible in the UK
It’s looking like I have hypermobility other Danlos because my intestines are not working correctly. I also have sarcoidosis. I also pass all of the tests for Ellers Dan. Lots and lots of other things but this video has helped me a lot because I have a lot of the same stuff you do.
Wow that was so informative 🤯 i had no idea! Gosh i didn’t know that about your grandfather that’s so sad 😞. You’re amazing and thank you for sharing your journey 💕💕 love you lots! So glad you have your hubs/your rock- he’s amazing 👏
Aww thank you for watching and for saying that babe! I really love and appreciate you. 💕 My hubs is seriously the best. Yes, so wild about my grandfather. But hopefully I’ll get more tests done soon and get more answers along the way. Love you lots! 💕
My wrists are very floppy as well. I had the same extra skin on my back and my arms I have problems with where my neck connects to my skull and have had sciatica and had surgeries for it and now I have a device in my back. this is all so familiar it’s crazy.
So much of this mirrors my own experience. 😢
Thanks for sharing your health journey and what EDS is. Sending you big hugs 🤗❤️💜
Thanks so much! Big hugs back 🥰💕
I am so normal and of good skin joints etc, like perfect.
then I developed all around all joints pain, after loss of wisdom tooth (year later).
what is it?
I am not like you at all, I am small type and very stiff (so worst at yoga).
Again these fingers and feet do not matter as everyone has hands, feet like yours (I checked my foot and it is same) so your feet are normal.
My fingers can bend more than yours as I am small (small people's fingers are softer than tall ones), but thumb not as much as yours (because yours is long so can go more to the wrist way due to larger bone vs mine too small).
I was told pain is fibromyalgia as it is not normal to have pain around all normal joints.
But what if it was lupus that damaged your joints so they lost collagen and started to dislocate? What if I have this too, and later my joints will do same just because it might be lupus in fact? My joints are so good like perfection, never any problems before.
So happy to have found your videos Stela! Thank you for sharing your journey. Every single one of us has such a valuable story, clues along the way in our mysterious oddities and ill health and misdiagnoses along the way. Thank you for spending time bringing awareness for the not yet diagnosed and companionship for those who are and so identify with your history. I was sent to the geneticist finally 4 years ago. Now it all makes sense. ❤ 61 yr old zebra
Love love video
Thank you so much for watching and saying that! It really means a lot to me! Xx
yes you are true one with heds 1 in 5000 as its not normal to dislocate anything.
but people withhout that claim to have heds too (normal people), so it is confusing as soon everyone will want heds and not fibromyalgia (old fashioned).
how to know who is true and who is not? as everyone claims to be heds and they tell to others you have heds if you have pain. then others think they do have too.
only dislocation should be heds as marker not other small things that everyone has.
Can rotator cuff tear be a symptom of eds??
Thank you for sharing your story with me. I, too have EDS. I have the Classical subtype. And many other co- morbities that comes from it. My joints, ligaments and muscles as well as my skin is affected by my EDS and so is my eyes . It took me turning 48 years to get my Dx. My Neurologist is the one who Dx me. My type shares the same genetic mutation with Osteogenesis, which my family has and EDS runs through my family, too. My niece has EDS. I’m prone to Bronchitis and I think it’s because EDS has ruined my immune system. It’s NOT all in our heads, it’s in our Connective Tissues! Doctors now and days are quite often quacks!
❤🙏🌸
Thanks for sharing!
This is so much like me. The worst for me is that I am often not believed. By collegues, as I am a health care professional.
So my health has deteriorated a lot, especially my mobility. So I can walk like 100 meters, and then I am very tired.
So I am thinking of getting my first wheelchair. My aims: Being less tired. Being less in pain.
Sorry, removed my initial comment because I did what I've done other times occasionally and commented something before getting farther in the video and I've saw that you mentioned what I mentioned in my other comments so I deleted it
I thought there were 13 sub-types of EDS. For 12 of them there is genetic testing. All of them can be tested for except Heds.
I have eds I can't split lol
Aww haha we’re all different! I don’t even see the point in being able to do the splits. It was just a random goal of mine at the time 😅💕
@@stelasulzdorf it's been a goal of mine too but I'm lazy 😂
@@Advocate.bettie I bet you’re not lazy! Living with EDS is really exhausting and painful!! 😫💕
I thought I was the only one flinging silverware around here
@@stelasulzdorfI hate seeing younger people doing things to show what is EDS. Like the "tricks", because it will only make it worse when get older. I've learned that the hard way with my fingers. I now need thumb fusion because it "was fun" when I was young to show tricks
I’ve been told yoga is the worst thing to do with EDS.
Don't forget everyone of us is different.
What eds u have