Well done, I’m diagnosed with hEDS and this is probably one of the best informational presentations I’ve seen. One slight clarification: genetic testing is done on all types, even hypermobile Ehlers-Danlos to not only clarify whether or not a known genetic mutation is present but also to rule out conditions that can look similar in some situations, such as Marfan’s Syndrome, Osteogenesis Imperfecta, and even Lupus for example.
My daughter had vEDS and made it to age 30. It's amazing what we know now than when she was diagnosed. There was no genetic testing and was all done by following her decompensation and comorbidities that came with it. Trying to get medical professionals to wrap their heads around it was more than difficult. I hope those who are diagnosed these days find a better educated medical community.
i have the Hypermobile type with a variant of uncertain significance for Dermatosparaxis type, which combined cause my body to present/function as having the Classical type. thank you for spreading a tiny bit of knowledge on a few of the types, and therefore spreading awareness. we're not too rare to care and it helps in the long run
I feel that I will pass my pathology exam in january. 🥳Thank you for your work, I am watching your videos in a row! So simple, informative and also detailed enough!
Its hypermobility not flexibility 😅. Would have been nice to have more than just three sumptoms 😢 there are so mang worse symptoms than stretchy skin and "flexible" joints.
Wow! Thank‘s a lot for this great demonstration! Now i can even try to show this to people and hope for them understanding the problem! I‘m a biologist with hEDS, i know all of this, but i couldn‘t explain it in this short period!
My friend’s daughter has it, and she’s suffering tremendously from her GI system every time she eats. How are you doing when you eat? Any suggestions or advices please? Thank you
@@susug4353 she might have mcas. I know people that react to most food. I have a friend… she couldn‘t eat anything for a while. Then she started from zero. As an example just potatoes. Then after a while she introduced something new like eggs. Just an example. Now she‘s able to eat about 10 till 15 foods and ingredients. It took a while 😥
@@QonnyWolf but suppose she will start with one type of food, what about when she feels hungry? Does she just continue eat the same food for few days??
Im newring the final stage of confirming my hEDS diagnosis. After that will come evaluation for comorbidities But its not flexible joints! Its hypermobile joints. Not quite the same thing :)
I have cEDS and so does my niece, and my nephew has been diagnosed with vascular EDS. I am guessing his comes from his dad’s family and my niece and mine comes from our moms. Ours is the COL5A2gene ( the same gene that causes Osteogenesis Imperfecta).
Thank you for this. I'll be able to show this to my GP. I also have Lipolymphedema, apparently EDS pops up in this diagnosis a lot, though they haven't chased down the genes yet for that. They do say it runs mother daughter lines.
@@lunar686I think it’s likely they’re related. Eds typically has other conditions occurring alongside it another example apart from this case would be pots. With certain types of eds, cardiovascular issues are common. You can even have issues with the heart skipping beats causing the person to faint because not only are the body’s joints unstable but the muscles surrounding the heart as well
@@Rose225. Thank you. I realise that particularly with how many conditions effect women (chronic and systemic, in comparison to acute and isolated in males), it seems to be really difficult to determine if it’s the same condition with different symptoms, or entirely different conditions with similar symptoms
i have skinny hands fingers i can lock it and bend it i can dislocate my shoulders and move knees i have prolapse mitral valve scoliosis myopia should i do eds genetic test? it will costs me about 800-1000€
"the recognition that many of the symptoms associated with Ehlers-Danlos syndrome are also characteristic of nutritional deficiencies" or, maybe they are only, nutritional deficiencies, just predisposed. A novel therapeutic strategy for Ehlers-Danlos syndrome based on nutritional supplements, 2004 "may be successfully alleviated using a specific (and potentially synergistic) combination of nutritional supplements, comprising *calcium, carnitine, coenzyme Q10, glucosamine, magnesium, *msm methyl sulphonyl methane, pycnogenol, silica, *vitamin C, and vitamin K, at dosages which have previously been demonstrated to be effective against the above symptoms in other disorders." * my emphasis
I don't think so. I supplement vitamin C as sodium ascorbate multiple times a day (GI absorption limitation), calcium as Freeda's calcium phosphate (bone meal also has that), msm from now foods, and magnesium (I think any magnesium works as long as you take it regularly. I doubt the other listed ingredients are essential since they are sufficient in most food or the body can produce them, or there is lack of evidence. (EDIT: do NOT buy the freeda vitamin c slow release. It doesn't work/formulation degrades the C. I guess they are just the only one with a decent calcium formula)
@@anntunaley9974my guess is no. If there is it’s harder to know the amounts of each. Not to mention it’s much cheaper to buy powder in bulk than it is to buy capsule premade
Why then was EDS so prevalent in the era of the old mining industry, back in the day with no work health & safety measures of today, breathing in the tailings ( leftovers ) not put in water as today… simply dumped in a pile to blow around for all to breath, hence overheating the body as my father said, instant nosebleeds coming up to the surface, both my parents had EDS now so do I & my family, In particular at the copper mines..my father born there & his father worked, always mining… Hippocrates noted, the ppl called the Scythian nomad warriors were particularly bendy, he commented “ it must be good for something “ What’s interesting, their skills with the production & use of copper…. Copper mining & usage in types of production …been around a long time … Now that we know EDS is genetic, if old mining procedures the cause & probably was ( once called stretchy cartilage ) If a miner had this problem then not able to work in mines by the early 1900’s sadly we can’t wind back the clock… wish tho was more early recognition in the medical field & better treatment programs
Well done, I’m diagnosed with hEDS and this is probably one of the best informational presentations I’ve seen. One slight clarification: genetic testing is done on all types, even hypermobile Ehlers-Danlos to not only clarify whether or not a known genetic mutation is present but also to rule out conditions that can look similar in some situations, such as Marfan’s Syndrome, Osteogenesis Imperfecta, and even Lupus for example.
My Dad had Marfans 😢
My daughter had vEDS and made it to age 30. It's amazing what we know now than when she was diagnosed. There was no genetic testing and was all done by following her decompensation and comorbidities that came with it. Trying to get medical professionals to wrap their heads around it was more than difficult. I hope those who are diagnosed these days find a better educated medical community.
I’m actually in the process of getting genetic testing for that disease
@@theEVILonionRAT I hope you find an answer. We have to name the beast before we can slay it.
@@theEVILonionRAT how did your test go? I hope they were able to give you some answers and treatment 😊
After they qualify doctors do not want to learn ANYTHING new or solve any problems.
Oh dear! So your daughter didn‘t make it? 😥 I‘m so sorry!
I have hEDS. The vascular type is just a basterd! 😥
i have the Hypermobile type with a variant of uncertain significance for Dermatosparaxis type, which combined cause my body to present/function as having the Classical type. thank you for spreading a tiny bit of knowledge on a few of the types, and therefore spreading awareness. we're not too rare to care and it helps in the long run
Thanks for sharing and we're hoping that this video helps! 🫀❤️💕
Same here! My abnormality is the ADAMTS2 gene. I was surprised this gene wasn't mentioned in the video.
Thankyou so much. Also the collagen synthesis part helped a lot...I was never able to retain it before.
Glad it helped! ❤️
I feel that I will pass my pathology exam in january. 🥳Thank you for your work, I am watching your videos in a row! So simple, informative and also detailed enough!
All the best, Patricia! 🙌🏼 💕 ✨
@@osmosis thank you so much🥹💕
Its hypermobility not flexibility 😅. Would have been nice to have more than just three sumptoms 😢 there are so mang worse symptoms than stretchy skin and "flexible" joints.
Yes so many, allergies, spinal weakness, myopie, bleeding, paresthesie...
Apparently there’s heart issues as well I found out I’m fainting because my heart muscles are loose and will skip beats
Misleading... the bruising , stretchy skin and flexibility are just a small spectrom of anomalies that can be produced by these genetic defects.
Those are the symptoms they have in common all the other symptoms are specific to what type of eds you have
As someone with cEDS, thanks for educating about this :)
Happy to help! ❤️
Thank you for the Year of the Zebra.
🥰❤️🙏🏼
Wow! Thank‘s a lot for this great demonstration!
Now i can even try to show this to people and hope for them understanding the problem!
I‘m a biologist with hEDS, i know all of this, but i couldn‘t explain it in this short period!
Happy to help! 🙏🏼
My friend’s daughter has it, and she’s suffering tremendously from her GI system every time she eats. How are you doing when you eat? Any suggestions or advices please?
Thank you
@@susug4353 she might have mcas. I know people that react to most food. I have a friend… she couldn‘t eat anything for a while. Then she started from zero. As an example just potatoes. Then after a while she introduced something new like eggs. Just an example. Now she‘s able to eat about 10 till 15 foods and ingredients. It took a while 😥
@@QonnyWolf but suppose she will start with one type of food, what about when she feels hungry? Does she just continue eat the same food for few days??
I have hEDS. Thank you for this great explanation. ❤
You're welcome! 💖
Sir TANNER MARSHAL, your voice over is super duper amazing and digestible🥰
What about the pain associated? I have hypermobile eds (no genetic testing yet) and am wracked with unbelievable chronic pain
Same, and besides physical therapy non-stop, only thing that works at all but only kind of
Usually the only thing offered for treatment is physical therapy unfortunately
We might be able to use mRNA vaccines one day but long way off
i also need to do test in my country costs around 800-1000€
Im newring the final stage of confirming my hEDS diagnosis. After that will come evaluation for comorbidities
But its not flexible joints! Its hypermobile joints. Not quite the same thing :)
I had to build tools for someone with this.
Good job
I have cEDS and so does my niece, and my nephew has been diagnosed with vascular EDS. I am guessing his comes from his dad’s family and my niece and mine comes from our moms. Ours is the COL5A2gene ( the same gene that causes Osteogenesis Imperfecta).
Thank you for this. I'll be able to show this to my GP. I also have Lipolymphedema, apparently EDS pops up in this diagnosis a lot, though they haven't chased down the genes yet for that. They do say it runs mother daughter lines.
You're welcome and we hope that this has been helpful 🙏🏼
May I ask if the disorders are cooccurring, or if there’s a cross over in symptom presentation?
@@lunar686I think it’s likely they’re related. Eds typically has other conditions occurring alongside it another example apart from this case would be pots. With certain types of eds, cardiovascular issues are common. You can even have issues with the heart skipping beats causing the person to faint because not only are the body’s joints unstable but the muscles surrounding the heart as well
@@Rose225. Thank you. I realise that particularly with how many conditions effect women (chronic and systemic, in comparison to acute and isolated in males), it seems to be really difficult to determine if it’s the same condition with different symptoms, or entirely different conditions with similar symptoms
i have skinny hands fingers i can lock it and bend it i can dislocate my shoulders and move knees i have prolapse mitral valve scoliosis myopia should i do eds genetic test? it will costs me about 800-1000€
no need for a genetic test if a rheumatologist can evaluate you clinically
@@lauraeblanco genetician told me to do WES analysis whole exome sequencing it costed me about 750€
Me, watching this, in lots of joint pain: oh hey, that's me!
Thankyou
You’re welcome! 😊
Check out the Incurably Awesome RUclips channel! She is new 😊 and has EDS
Rodriguez Shirley Perez Gary Hall Jennifer
"the recognition that many of the symptoms associated with Ehlers-Danlos syndrome are also characteristic of nutritional deficiencies" or, maybe they are only, nutritional deficiencies, just predisposed.
A novel therapeutic strategy for Ehlers-Danlos syndrome based on nutritional supplements, 2004
"may be successfully alleviated using a specific (and potentially synergistic) combination of nutritional supplements, comprising *calcium, carnitine, coenzyme Q10, glucosamine, magnesium, *msm methyl sulphonyl methane, pycnogenol, silica, *vitamin C, and vitamin K, at dosages which have previously been demonstrated to be effective against the above symptoms in other disorders."
* my emphasis
Is there a supplement that combines all these things we need?
I don't think so. I supplement vitamin C as sodium ascorbate multiple times a day (GI absorption limitation), calcium as Freeda's calcium phosphate (bone meal also has that), msm from now foods, and magnesium (I think any magnesium works as long as you take it regularly. I doubt the other listed ingredients are essential since they are sufficient in most food or the body can produce them, or there is lack of evidence. (EDIT: do NOT buy the freeda vitamin c slow release. It doesn't work/formulation degrades the C. I guess they are just the only one with a decent calcium formula)
@@anntunaley9974my guess is no. If there is it’s harder to know the amounts of each. Not to mention it’s much cheaper to buy powder in bulk than it is to buy capsule premade
Why then was EDS so prevalent in the era of the old mining industry, back in the day with no work health & safety measures of today, breathing in the tailings ( leftovers ) not put in water as today… simply dumped in a pile to blow around for all to breath, hence overheating the body as my father said, instant nosebleeds coming up to the surface,
both my parents had EDS now so do I & my family,
In particular at the copper mines..my father born there & his father worked, always mining…
Hippocrates noted, the ppl called the Scythian nomad warriors were particularly bendy, he commented “ it must be good for
something “
What’s interesting, their skills with the production & use of copper…. Copper mining & usage in types of production …been around a long time …
Now that we know EDS is genetic, if old mining procedures the cause & probably was ( once called stretchy cartilage ) If a miner had this problem then not able to work in mines by the early 1900’s
sadly we can’t wind back the clock… wish tho was more early recognition in the medical field & better treatment programs
Can this the reason why i caught non stop
1
I have kEDS and this video explains it so well. 🩵
Thank you for letting us know! ❤️