Ehlers-Danlos Syndromes
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- Опубликовано: 19 янв 2024
- Ehlers-Danlos syndrome (EDS) refers to a collection of rare genetic disorders that impact connective tissue. These conditions are marked by distinct features such as stretchable skin, flexible joints, and fragile tissues. The Ehlers-Danlos syndromes (EDS) are named after two doctors, Dr. Edvard Lauritz Ehlers and Dr. Henri-Alexandre Danlos, who described the condition in the early twentieth century.
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No no no we want your hand drawings back. 🥺🖤🖤😢
Suggestion taken on board!
Unless this is easier for you to do then it’s okay 😊
Armando!! After watching your videos for over 10 years, I'm so excited you finally covered EDS 🤗🥰💜 I personally have Classical Ehlers-Danlos, genetically verified when I was 12 (COL5A2 gene).
I was born with severe kyphoscoliosis and had spinal fusion surgery when I was very young. I had an inguinal hernia that needed surgical repair at age 7. I have a SOLID 9/9 on the Beighton Scale as well 😂 At age 17, I had a heart surgery to close an ASD. In high school, I also had a series of surgeries on my feet to help align my toes better, but my body completely destroyed it and everything moved 🥺 Just last year (January, at age 30) I had open heart surgery to fully replace my aortic valve (now bioprosthetic). That sucked lol. I've needed plenty of maintenance, you could say.
Anyways, just wanted to say you did a wonderful job covering and discussing these many subtypes 🙃 I have a degree in Biomedical Sciences and went to PA school, so science is my thing as well haha. I'm unfortunately able to work now due to my symptoms. I unfortunately have (the often comorbid) POTS, and my symptoms are severe 😔 I've experienced/experience syncope, severe dizziness, nausea, heat intolerance, severe hyperhidrosis, low blood pressure, high HR, loss of vision on standing, severe brain fog, crippling fatigue, memory loss, etc. As for my EDS, I also have every symptom essentially: fragile/soft/stretchy skin that tears easily and the atrophic scars; poor healing, requiring stitches to be left in for 1.5x normal; dislocation of my shoulders, fingers, and knees; scoliosis still remaining; severe hyperextension of joints requiring me to wear braces; essentially an inability to walk more than 1,000 steps daily; etc. Interestingly, I was actually a de novo mutation case -- my family has been tested and nobody has it! Lucky me 🤷🏼♀️🤦🏼♀️ Unfortunately, I also suffer from Narcolepsy. Long story short...I've got it all 😂
If anyone has any questions to ask someone with Classical EDS, feel free to ask 🙃 Thanks again Armando for discussing this poorly understood/highly underdiagnosed Syndrome! On behalf of all EDSers, I sincerely thank you 🥰💜🫂
:)
I too also have POTS and EDS-I haven’t had the benefit of a geneticist yet, but I’ve often wondered why these so often occur together.
I also broke my spine at 19 and had a fusion at L4/L5, and have fainted multiple times from the severe dizziness/blacking out.
Also had a heart procedure at 12 to perform an ablation because they thought it would stop me from fainting so much(I guess maybe an issue with the connective tissues in my heart? Not sure-one thing we don’t have in common is I am definitely not in the medical field!)
@@laurensweat5869when I was seen by the doctor she noticed my heart beat was irregular and skipping beats she said this could be from loose muscles in the heart (from eds). This can cause people to faint. I haven’t been diagnosed with pots nor do I think I have it but eds can cause all sorts of tissue problems so I guess it’s not a surprise that not only do the joints get unstable but the heart as well
Thank You Sooo much Sir!
Thank you! I love your videos!
Since copper activates lysyl oxidase and lysyl oxidase helps manage the collagen and elastin in the human body, how do you know some of these symptoms aren’t related to copper deficiency causing poor lysyl oxidase activity?
How, exactly, do you separate out what effects are caused by genetics and what effects are caused by epigenetics?
Thank you for the really interesting video!☺
Finally you made it 🥹🎉
Thank you 🎉.
can you pleas say how you make these videos? I want to make these kinds of contents for my students.
Helpful!✨
Спасибо
Will genetic testing reveal hypermobile subtype ? Or only the classic and vascular subtypes ? Thank you !!
No there is not a known genetic marker for hEDS
Please make video on Syndrome is best ❤
wild upload, I just had a vascular EDS pt in the most ridiculous shock I've ever seen. ty for the info
t. paramedic
❤
There are actually 14 types and the unclassified type
wow
LUFFYYYYYY
Mugiwara
वैरी गुड ❤
First comment. Yay!!!
irrelevant
@@waelfadlallah8939 irrelevant what?
@@SurvivalIslandAnimations this is not the channel to say "first comment"
@@waelfadlallah8939 what r you the channel police. Gtf outta here weirdo.