I watched a few of your videos as I was diagnosed with cEDS in 2012 after getting sick in 2001 and then developing keratoconus is 2011 (I found EDS on my own but didn't think I had it as I'm not overly hypermobile and have never dislocated a joint). I had a misdiagnosis for 11 years prior but am confident the geneticist I saw in 2012 was correct as I have general EDS criteria, advanced keratoconus (one transplant thus far), and then cigarette paper scarring, extremely thin, fragile and translucent skin which is also stretchy, and so forth. My skin was normal to me before my late 30s, minus the scars. I'm a 2/9 on the Beighton (I can pull my thumbs to my wrists) but have hypermobility elsewhere and also have the thumb and wrist sign seen in Marfan's. The severe and chronic muscle pain is the worst for me and that's been a constant for 20 years now. I am very well-versed in EDS and have no idea why I decided to look through the videos on here (boredom, in all honesty) but I noticed you are from North Dakota. Interesting. I inherited this disorder from my mother, not that she cares to be diagnosed or is as sick as I am, and she was born in North Dakota and all her family is from there, as well. They are from the Mandan area. I have always suspected there might be a cluster of cEDS in central North Dakota but had no one to ask as she's not close to her family and my mother is in her 70s now so many have passed on. My late grandfather looked like he had Marfan's and could pop his hip in and out on his own volition. Well, just curious as I was surprised when I saw North Dakota of all places in one of your videos. I am quite sure cEDS came from my maternal grandfather but beyond that, I am unsure if it came from his mother or father or possibly was just a spontaneous mutation (my grandfather was of German ancestry on both sides). They were farmers in the 1800s-1900s so hardly disabled people. I hope you get a correct diagnosis. It changed things for me as doctors took me more seriously than when I had a fibro (mis)diagnosis and I know what I'm dealing with which helps when new issues emerge, such as an immune deficiency diagnosed in 2018 which was something else I suspected and then sought a diagnosis for (ugh, why do I have to be the doctor all the time). The comorbid conditions have continued to pile up since I got sick in my late 20s but now I know how to handle them better which is likely just due to time and age. The five stages of grief is a good tool, as is staying occupied the best you can. It's good you are educated on things as most doctors are not well-versed in genetic CTDs at all. I frequently know more than they do despite living in a large city, but I find that being an educated person in general and now being the same age or older than my doctors gives the relationship a different dynamic (well, some still have an ego but it's better now that I'm in my late 40s). Best wishes to you on your journey and please stay positive as it helps. I appreciate your accurate videos on EDS; keep it up. :)
Thats really frustrating 😢 Im working on getting an official diagnosis to figure out wth is wrong with me, naturopath says Heds, physio says he can't say 100% but definitely HSD at the least and every GP thinks i have anxiety 😒 having issues like this sucks because of the lack of information ❤
There’s something oddly validating about diagnosis. Not that we want to be sick but we’re not crazy! Calling it by name is not only taking ownership of it but it’s working for advocacy. Regardless, you’re still part of the zebra community 💕
Jo Lochary thank you❤️ that, and it’s so much less scary when something hurts and you know exactly WHY it hurts. Otherwise I freak out and think I’m dying.
its damn expensive NOT to have a diagnosis plus pain makes me insane and not my best self. legal problems with NOT having a diagnosis, every damn healthcare institution will have you notified for possible substance abuse because you're not suppose to have medical help all prescribed under the umbrella of anesthesia department of the hospital. That means your doctor has to plan your pain management.
I’m not sure what you mean by there are meds and procedures you can’t have, but that’s exactly a great reason why it’s important to be diagnosed. It affects a huge part of my life and medical care, so having a diagnosis is very important.
One EDS disanosis is all proof needed in my book :) You got worse symptoms and have been diagnosed twice as many time as me so you got EDS For sure. Since you got a wheelchair because of youre EDS Diagnosis then do you think I can get a wheelchair as well? My walking tolerance is decreasing so I will need a wheelchair in a few years since my legs aren't stable enough to carry my body that well anymore
@@jwilleseries7764 absolutely!! If having a wheelchair can help you gain more independence and save your body some energy then you should definitely get one
@@shelbystewart5495 You're right about that :D A friend of mine who is in a wheelchair for a different reason also suggested it to me due to my problems with walking & standing for longer time periods. I never know when my legs are going to get injured from walking & today I could not walk in my apartment for a short time so I had to crawl. When my legs flare up & I cant stand well I often lean of stuff & that hurt my wrists even more than they usually do so using crutches would not be a good idea & I do think getting a wheelchair in a few years is the best solution even though I won'tuse it full time. Do you need to use yours most of the time or part time?
I honestly don’t think she was super familiar with actual real life cases of EDS. She said because I haven’t had any prolapses or ever had to be hospitalized that I may not have EDS. It was ridiculous
@@shelbystewart5495 not to be cynical, but you are young. You might not have had it "yet" 🤔 im sorry for you. That is really frustrating. Doctors aren't knowledgeable about everything unfortunately. I learnt that too and now im always specifically trying to find EDS specialist but that is hard.
benign joint hypermobility syndrome is an outdated diagnosis, it changed in 2017... That's why her diagnosis was different, she hadn't study about it for a few year... Did you figure what is the right one?
@@shelbystewart5495 omg that is terrible! I just learned a few days ago that you can order the testing on your own through Genome Medical and Invitae lab. That’s what I’m going to do I think. I got an hEDS diagnosis and then found out I have a massive family history of this w some pretty severe symptoms so I want to know that it’s the right diagnosis to help the, and any other relatives and their kids etc to know what might be going on.
Ohh so sorry, she was not updated, bening joint hypermobility stopped being used in 2017 when the new criteria for EDS and HSD came out....
I watched a few of your videos as I was diagnosed with cEDS in 2012 after getting sick in 2001 and then developing keratoconus is 2011 (I found EDS on my own but didn't think I had it as I'm not overly hypermobile and have never dislocated a joint). I had a misdiagnosis for 11 years prior but am confident the geneticist I saw in 2012 was correct as I have general EDS criteria, advanced keratoconus (one transplant thus far), and then cigarette paper scarring, extremely thin, fragile and translucent skin which is also stretchy, and so forth. My skin was normal to me before my late 30s, minus the scars. I'm a 2/9 on the Beighton (I can pull my thumbs to my wrists) but have hypermobility elsewhere and also have the thumb and wrist sign seen in Marfan's. The severe and chronic muscle pain is the worst for me and that's been a constant for 20 years now.
I am very well-versed in EDS and have no idea why I decided to look through the videos on here (boredom, in all honesty) but I noticed you are from North Dakota. Interesting. I inherited this disorder from my mother, not that she cares to be diagnosed or is as sick as I am, and she was born in North Dakota and all her family is from there, as well. They are from the Mandan area. I have always suspected there might be a cluster of cEDS in central North Dakota but had no one to ask as she's not close to her family and my mother is in her 70s now so many have passed on. My late grandfather looked like he had Marfan's and could pop his hip in and out on his own volition. Well, just curious as I was surprised when I saw North Dakota of all places in one of your videos. I am quite sure cEDS came from my maternal grandfather but beyond that, I am unsure if it came from his mother or father or possibly was just a spontaneous mutation (my grandfather was of German ancestry on both sides). They were farmers in the 1800s-1900s so hardly disabled people.
I hope you get a correct diagnosis. It changed things for me as doctors took me more seriously than when I had a fibro (mis)diagnosis and I know what I'm dealing with which helps when new issues emerge, such as an immune deficiency diagnosed in 2018 which was something else I suspected and then sought a diagnosis for (ugh, why do I have to be the doctor all the time). The comorbid conditions have continued to pile up since I got sick in my late 20s but now I know how to handle them better which is likely just due to time and age. The five stages of grief is a good tool, as is staying occupied the best you can. It's good you are educated on things as most doctors are not well-versed in genetic CTDs at all. I frequently know more than they do despite living in a large city, but I find that being an educated person in general and now being the same age or older than my doctors gives the relationship a different dynamic (well, some still have an ego but it's better now that I'm in my late 40s). Best wishes to you on your journey and please stay positive as it helps. I appreciate your accurate videos on EDS; keep it up. :)
Thank you so much for watching!! Yeah we really do have to be our own doctors... I’m glad they respect you more with age though!
Thats really frustrating 😢 Im working on getting an official diagnosis to figure out wth is wrong with me, naturopath says Heds, physio says he can't say 100% but definitely HSD at the least and every GP thinks i have anxiety 😒 having issues like this sucks because of the lack of information ❤
There’s something oddly validating about diagnosis. Not that we want to be sick but we’re not crazy! Calling it by name is not only taking ownership of it but it’s working for advocacy. Regardless, you’re still part of the zebra community 💕
Jo Lochary thank you❤️ that, and it’s so much less scary when something hurts and you know exactly WHY it hurts. Otherwise I freak out and think I’m dying.
its damn expensive NOT to have a diagnosis plus pain makes me insane and not my best self. legal problems with NOT having a diagnosis, every damn healthcare institution will have you notified for possible substance abuse because you're not suppose to have medical help all prescribed under the umbrella of anesthesia department of the hospital. That means your doctor has to plan your pain management.
@@zeynand4039 👏👏👏👏👏
@shelby do you still go through this account? You mentioned Telehealth so I'm wondering if you're in Ontario?
Amazing ❤️
Why get diagnosed? One good reason is if you have EDS there are many medical procedures and meds you cannot have.
I’m not sure what you mean by there are meds and procedures you can’t have, but that’s exactly a great reason why it’s important to be diagnosed. It affects a huge part of my life and medical care, so having a diagnosis is very important.
One EDS disanosis is all proof needed in my book :) You got worse symptoms and have been diagnosed twice as many time as me so you got EDS For sure. Since you got a wheelchair because of youre EDS Diagnosis then do you think I can get a wheelchair as well? My walking tolerance is decreasing so I will need a wheelchair in a few years since my legs aren't stable enough to carry my body that well anymore
@@jwilleseries7764 absolutely!! If having a wheelchair can help you gain more independence and save your body some energy then you should definitely get one
@@shelbystewart5495 You're right about that :D A friend of mine who is in a wheelchair for a different reason also suggested it to me due to my problems with walking & standing for longer time periods. I never know when my legs are going to get injured from walking & today I could not walk in my apartment for a short time so I had to crawl. When my legs flare up & I cant stand well I often lean of stuff & that hurt my wrists even more than they usually do so using crutches would not be a good idea & I do think getting a wheelchair in a few years is the best solution even though I won'tuse it full time. Do you need to use yours most of the time or part time?
Why would she diagnose you with bening joint hypermobility when you have elastic skin???
I honestly don’t think she was super familiar with actual real life cases of EDS. She said because I haven’t had any prolapses or ever had to be hospitalized that I may not have EDS. It was ridiculous
@@shelbystewart5495 not to be cynical, but you are young. You might not have had it "yet" 🤔 im sorry for you. That is really frustrating. Doctors aren't knowledgeable about everything unfortunately. I learnt that too and now im always specifically trying to find EDS specialist but that is hard.
benign joint hypermobility syndrome is an outdated diagnosis, it changed in 2017... That's why her diagnosis was different, she hadn't study about it for a few year...
Did you figure what is the right one?
Did they not run a genetic test for the other types of EDS???
@@Aurea8787 nope. She refused to. I drove 4 hours for that appointment for nothing.
@@shelbystewart5495 omg that is terrible! I just learned a few days ago that you can order the testing on your own through Genome Medical and Invitae lab. That’s what I’m going to do I think. I got an hEDS diagnosis and then found out I have a massive family history of this w some pretty severe symptoms so I want to know that it’s the right diagnosis to help the, and any other relatives and their kids etc to know what might be going on.
Sounds like Lyme disease somewhere in the past?
I got tested actually when I first started looking for a diagnosis! Nothing showed up