What is Classical-Like Ehlers-Danlos Syndrome?
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- เผยแพร่เมื่อ 29 ก.ย. 2024
- In this video, I give a basic explanation of one the rarer subtypes of Ehlers-Danlos Syndrome: the Classical-Like subtype. I'll be doing videos on all 12 of the rarer subtypes of EDS, so stay tuned for those!
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Do you or someone you know have Classical-Like EDS?
I have EDS, dx at 41, I’m now 51. It explained soooooo much of my childhood and childbearing years !! I’m 5 weeks post spinal fusion surgery and hoping it’s going to, eventually, help with some of my back issues. But in true EDS style my skin is playing up and one of the two incisions keeps popping open 🙄. This happened when I had c sections, years ago but obviously didn’t know I had EDS then. My skin can cause me so many issues, and I have HUGE stretch marks from pregnancy, big wide keloid scarring, that is paper thin but didn’t know then I had EDS, plus each of my 4 babies became more prem in order, until my final lil girl, 3 months early weighed 3lb, my womb, ligaments etc couldn’t support the weight of babies, they were all tough pregnancies x
I have Classical-like Ehlers Danlos Syndrome. Was genetically diagnosed in January, however I was diagnosed to have EDS over 30 years ago using the Beighton scale measurement.
I have friends on TickTock who have clEDS.
I think me, my sister, and possibly my mother have ClEds. Thought we couldn’t have eds for a while cuz none of us seriously atrophic scar, my mom even keloids sometimes. None of us have diagnoses but I am actively seeking one atm due to rapidly deteriorating joint health. My dad has flat feet and hypermobility issues, but my mom has had it so rough. Both her ankles have been broken, her Achilles’ tendon tore tripping over a tent, first knee replacement in her 40s, second knee a few years later, surgeries for multiple soft tissue conditions in both hands, recently had spine surgery and on top of that she now has had a prolapse too, as well as hand foot malformations. Me and the sister got the hand and foot deformities too, I have hip FAI and tore both labrums in my hips at 19, shoulders starting to go too and I’ve had pre-arthritic knees since I was a teenager (didn’t know then, “growing pains”, sure) and nerve issues in my left trap. Also got gastrointestinal issues and all of us have really low muscle tone and pelvic floor weakness, although I’m the one with seriously concerning proprioception. Me and the mom have swallowing issues, although hers may have cleared up. I’m only a couple years from 30. Sisters in her early 20s and dealing with tendonitis now. This all goes back generations, gma on moms side has a lot of the same issues, and that gpa has some hypermobility too, I still doubt they have the full recessive combo though. Very few resources in MN it seems sadly.
@@marley4799 With that much strong family history, it sounds more like an autosomal dominant inheritance pattern to me. It's well worth traveling out of state to see a geneticist for an evaluation and genetic testing! That's what I did. There's definitely some type of connective tissue disorder running rampant in your family!
My friend , My upper and lower limb fingers are hyper mobile. Is it Eds . I have lot problems like impulsivity, depression, anxiety, rejection sensitivity disorder, time blindness and confusion . I suspect I have ADHD. My life really ruined by these. I don’t have any pain in joints except weakness in wrist sometimes. I was so skinny, gained some weight in 30’s but the over all skeletal frame doesn’t grow much. I’m tall enough , good in sports. What’s really happening to me . Do I consult a specialist?
@jithinlakshman9605 I would definitely ask a primary care provider, maybe a DO instead of an MD, since they are often better at looking at the whole picture. Tell them just what you told me and say you think they might be connected and want help diagnosing and managing whatever the cause is. Be sure to emphasize how much your issues are affecting your quality of life.
i second what she said above me! :)
So, my siblings and I are diagnosed Autosomal dominant classic like Ehlers-Danlos through genetics testing and personal and family history. We get the mutation from our mother. What that means for us is, we are symptomatic through only one parent. My child is diagnosed hEDS. My sister has both AD clEDS and type 7a both diagnosed through genetic testing. We make a joke that we get RARE slapped on our butts more often than anyone I know.
@@HStaecker You are very rare indeed!