Ehlers-Danlos syndrome (Year of the Zebra)

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What is Ehlers-Danlos syndrome? Ehlers-Danlos syndrome is a group of related genetic conditions which are all caused by defective collagen synthesis. Normally, collagen provides strength and elasticity to our bodies, and it’s found in the skin, ligaments, tendons, and bones. In Ehlers-Danlos syndrome, defective collagen leads to stretchy skin, easy bruising, and joints that are super flexible.
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Опубликовано:

15 июл 2023

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Комментарии : 62

@elizabethr.9359 11 месяцев назад

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.

@DreuThomas-tf2ts Месяц назад

My Dad had Marfans 😢

@mrsjamessmom9044 Год назад

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.

@theEVILonionRAT Год назад

I’m actually in the process of getting genetic testing for that disease

@mrsjamessmom9044 Год назад

@@theEVILonionRAT I hope you find an answer. We have to name the beast before we can slay it.

@lunar686 9 месяцев назад

@@theEVILonionRAT how did your test go? I hope they were able to give you some answers and treatment 😊

@MsMesem 9 месяцев назад

After they qualify doctors do not want to learn ANYTHING new or solve any problems.

@QonnyWolf 8 месяцев назад

Oh dear! So your daughter didn‘t make it? 😥 I‘m so sorry! I have hEDS. The vascular type is just a basterd! 😥

@salonijoshi4481 Год назад

Thankyou so much. Also the collagen synthesis part helped a lot...I was never able to retain it before.

@osmosis Год назад

Glad it helped! ❤️

@justanothertypicalartist3884 Год назад

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

@osmosis Год назад

Thanks for sharing and we're hoping that this video helps! 🫀❤️💕

@Christianna271 8 месяцев назад

Same here! My abnormality is the ADAMTS2 gene. I was surprised this gene wasn't mentioned in the video.

@Evelyn_2401 9 месяцев назад

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.

@MsMesem 9 месяцев назад

Yes so many, allergies, spinal weakness, myopie, bleeding, paresthesie...

@Rose225. 2 месяца назад

Apparently there’s heart issues as well I found out I’m fainting because my heart muscles are loose and will skip beats

@larenpi Год назад

As someone with cEDS, thanks for educating about this :)

@osmosis Год назад

Happy to help! ❤️

@MsMesem 9 месяцев назад

Misleading... the bruising , stretchy skin and flexibility are just a small spectrom of anomalies that can be produced by these genetic defects.

@okaaayyyyyyyy 2 месяца назад

Those are the symptoms they have in common all the other symptoms are specific to what type of eds you have

@patriciadoraszanto2494 7 месяцев назад

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!

@osmosis 7 месяцев назад

All the best, Patricia! 🙌🏼 💕 ✨

@patriciadoraszanto2494 6 месяцев назад

@@osmosis thank you so much🥹💕

@jennywebb4678 Год назад

Thank you for the Year of the Zebra.

@osmosis Год назад

🥰❤️🙏🏼

@levifarr8211 5 месяцев назад

What about the pain associated? I have hypermobile eds (no genetic testing yet) and am wracked with unbelievable chronic pain

@Scott_Silver 2 месяца назад

Same, and besides physical therapy non-stop, only thing that works at all but only kind of

@Rose225. 2 месяца назад

Usually the only thing offered for treatment is physical therapy unfortunately

@Scott_Silver 2 месяца назад

We might be able to use mRNA vaccines one day but long way off

@adewwe8506 2 месяца назад

i also need to do test in my country costs around 800-1000€

@itsmeaimster6698 Год назад

I have hEDS. Thank you for this great explanation. ❤

@osmosis Год назад

You're welcome! 💖

@QonnyWolf 8 месяцев назад

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!

@osmosis 8 месяцев назад

Happy to help! 🙏🏼

@susug4353 4 месяца назад

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

@QonnyWolf 4 месяца назад

@@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 😥

@susug4353 4 месяца назад

@@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??

@MegaDerpification Год назад

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 :)

@Anon.G Год назад

I had to build tools for someone with this.

@ashleelarsen5002 Год назад

Good job

@shannongreenwell1278 3 месяца назад

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).

@adilraza0513 Год назад

Thankyou

@osmosis Год назад

You’re welcome! 😊

@chanvalentine8283 Год назад

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.

@osmosis Год назад

You're welcome and we hope that this has been helpful 🙏🏼

@lunar686 9 месяцев назад

May I ask if the disorders are cooccurring, or if there’s a cross over in symptom presentation?

@Rose225. 2 месяца назад

@@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

@lunar686 Месяц назад

@@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

@adewwe8506 2 месяца назад

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€

@lauraeblanco 2 дня назад

no need for a genetic test if a rheumatologist can evaluate you clinically

@adewwe8506 День назад

@@lauraeblanco genetician told me to do WES analysis whole exome sequencing it costed me about 750€

@SMMore-bf4yi 6 месяцев назад

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

@Rene-uz3eb 6 месяцев назад

"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

@anntunaley9974 2 месяца назад

Is there a supplement that combines all these things we need?

@Rene-uz3eb 2 месяца назад

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.

@Rose225. 2 месяца назад

@@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