My Translucent Skin with VEDS (Vascular Ehlers-Danlos syndrome)
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- Опубликовано: 29 июл 2024
- In case anyone feels self conscious about their translucent skin with VEDS, or is wondering what it looks like, here is what mine looks like :)
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lol - commenting just in response to your professional's claim that too much iron is not a thing: It is! Haemochromotosis is an inherited disorder involving too much iron and ironically, one of the symptoms is bronzed skin. Fun fact! Thanks for posting your video! Just finished watching it - I think your veins look really cool! I can understand why you would have felt self conscious posting, but I'm glad you did. Thank you
I can totally relate, I used to hate the way it looks, but now as I’m getting older I accepted it .
I'm learning so much from your videos! I love so much that you're turning your experience into an educational content for others, and to forge community with those with the same disorder and/or other disabilities. Thank you so much for sharing.
Hey Chris! Thanks for the sweet comment. I’m so glad the videos have been helpful and I appreciate it!
Thank you for sharing this, it was really helpful for me figuring out my own body and potential connective tissue issues.
thank you for sharing this! I can't imagine how uncomfortable and vulnerable it was to share. But it was super helpful for me (as someone recently diagnosed and trying to figure out what is "common"). I appreciate it!
I'm hEDS woman in Japan, I'm 25 of ages. I really hate my skin like this. I'm not good at English but I research in English because there's no information in Japan about EDS and I found this video. I'm so sad about my skin and this problem is always in my mind... but now I feel better. Thank you so much.
Wait? Is Translucent Skin also a charactheristic of hEDS and not just a charactheristic of vEDS?
@@jwilleseries7764
Yes, I’ve been diagnosed with Classical EDS like 2 weeks ago and one of my symptoms is translucent skin . It’s not necessary to have this symptom tho .
@@jwilleseries7764 I have hypermobile Ehlers-Danlos syndrome and my skin is also translucent, I even asked a cardiologist specialized in genetics if I might have vEDS because of my translucent skin but he said no, only hEDS in my case apparently.
@@jwilleseries7764 I'm curious to know this too. I'm diagnose with HEDS. But I seem to have a lot of VEDS symptoms (including translucent skin.). Wondering if I should get the genetic test for VEDS. The geneticist didnt want to do it because its not covered by my insurance.
@@jwilleseries7764 yes! i have hEDS and my skin is nearly identical to hers.
Nobody should feel disgusted by this. It's not like everyone doesn't have veins. Everyone is amazing and beautiful. Having VEDs doesn't make u abnormal. ❤️❤️❤️
Thank you so much for posting this, you ARE beautiful, and I swear you are my twin skin wise. I may have tested neg fir the ved gene, and have just basic Eds with massive skin similarities to veds, and I have not pursued getting a second blood test as u had said previously that it’s unlikely they missed it the first time. I had to do a double
Hi! I don't know if I have VEDS (hope not) but I have translucent skin too and I think it's beautiful! For the people out there that think otherwise, you have to know that some centuries ago people actually draw with makeup visible veins in their chest because that was considered a noble feature. So love yourselves guys, you are beautiful, beauty standards are always changing.
Did not know this!!! Fascinating!!
I am sort of in the same boat as I will be evaluate for EDS but I don't know what subtype and I have translucent skin so I really hope that it is not VEDS. I actually didn't know it was associated with EDS As I lived in South Africa so I just assumed that it was a racial thing as I am of Scottish origin and I used too think it looked but but then I started to think that it is pretty.
I hope that you can get evaluated and that it isn’t VEDS! But if it is, there’s a growing community and support network. Will be keeping my fingers crossed for you! ❤️
@@TranslucentOne Thanks a lot and so do I :) I think it is "hopefully" another EDS Subtype as that is more likely the case with me but I wondered what subtypes where associated with Translucent Skin and that's how I found this video
@@jwilleseries7764 Hey! Did they find a reason for your translucent skin? (I'm on an anxious google binge rn bc I'm scared I have undiagnosed veds 😂)
You are beautiful, first of all because you are a lovely and beautiful person, and also (which I know is not so important, just my opinion only) you have an incredible beautiful eyes and a lovely smile. Hope you keep sharing this kind of content, is really helpful. Thank you for being so brave and inspiring.
Thanks so much Laura ❤️
You seriously have my legs. Mirror reflection when I see your back/neck/chest/legs/hands etc.. woah!
You are beautiful, veins showing or not. I definitely feel like I accept my body parts I hated the most once I had a reason. I have knock knees and have hated my legs so much because of it. Now that I know it’s from hEDS I am able to accept them a little more. Thanks for sharing!
We are all beautiful, imperfectly perfect strong zebra warriors! I used to hate my flat feet, heel papules and lymphedema (cankles) but learned to not care so much with time and age.
You have the most prominent eyes I've ever seen, stunning!!
Aw thanks Chelsea! :)
As a body builder, I see your condition as a godsend. I’m a sucker for vascularity and am envious for those with such a beautiful genetic disposition. You should all love your bodies the way they are ❤
That’s very sweet. I love my body, and I’ve grown to love the oddities about it, but I don’t love that I don’t feel safe in it. It comes with the risk of spontaneous life-threatening artery ruptures, making heavy weight lifting unsafe. Thanks for the love!
I also have translucent skin (dunno if it's VEDs) but it's really cool to see all those veins and it's not something you should hide :))
I don't have VEDS, but that you for sharing this and you are beautiful!
Thank you ❤️
You are beautiful and I adored that picture with the veins showing.
I have hEDS but also have the super translucent skin. My rheumatoligist refuses to do genetic testing, unfortunately I'm in a country where the knowledge on EDS is very poor. My eyelids are the most translucent and previous boyfriends often asked if I was wearing eyeshadow. On my chest and legs it is pretty visible too. I've had a number of DVTs and can clearly see the collatorals. Doctors were surprised about that too but again chose to ignore it.
I’m so sorry to hear you can’t get genetic testing to rule out VEDS. What country are you in?
@@TranslucentOne the Netherlands.
I’m trying to remember which docs are in the Netherlands. You may try to reach out to the nurse in the help and resource center at The VEDS Movement. Thevedsmovement.org/ask
@@TranslucentOne I know there are a few doctors that diagnose, but the problem here is you first have to go through your GP to get a referral for a specialist, and I got sent to a local rheumatologist who wasnt very knowladgeable and said my skin wasnt stretchy enough and refused to do further testing. I'm now in the process to try to get a second opinion through my insurance but it is a very slow and bureaucratic.
I saw some people like that who has as same as your skin you can see their veins through their skin, idk but i feel so attracted to this people whenever i see them i will stare at them for a long time idk if thats weird or not but i admire this.
That is so cool! I'm also a bit translucent but my veins aren't as dark
You're beautiful Katie 🤟🏼
Thank you ❤️
My hands have looked veiny and boney my whole life. People would say to me, that should eat more foods that I needed more weight to hide those features. I gained weight as I got older and nothing changed. I can still see almost all of my veins, and while some people told me it was gross I just sort learned to accept that I looked this way. I thought it was normal and those who didn’t have visible veins were different. I didn’t know that the opposite was true 🥹. The time I shaved my head bald, my veins were very visible. Glad I got over that phase and keep my hair long, it’s thin like yours happens to be and I am self conscious about it, a woman losing her hair tends be self aware.
I’m not disgusted when I see veins, I think it means we’re all unique and have our own stories about each one of us.
Sorry…. Had to pause- but did a double take with your hands- like looking at my own,,,, as well as everything else vein/translucent wise, if not even more. And yes, first as a child I thought it was just normal, but then in teens I was super self conscious about my easy bruises, blushing, skin tears, scars, etc etc. but we are beautiful zebras 🦓 ❤️
Thank you so much, Kat. Beautiful zebras! ❤️❤️ remind me, did you ever get genetically tested for other related conditions?
@@TranslucentOne I saw a geneticist at a hospital here in New Jersey, after a year wait, in 2017, passed the beighton 9/9 for HEds, and had the full blood panel but nothing came up for veds etc. I do have pots, mcads, gastroparesis, scoliosis, lymphedema, and a dozen other comorbids .., I just always suspected veds due to my similar facial features , the skin issues etc to yours, though I’ve never had any ruptures, aortic issues etc.
@@TranslucentOne I just realized, did you mean like marfans or loewy dietz (sp)? If so, I don’t think so, unless it was done on the same blood panel they did for the EDs. Which I can dig out and look at. I do know she said I had some marfan esque traits- long fingers, long arms and legs.
Yeah that’s what I meant :) although I’d be surprised if the geneticist didn’t already test for it. In any case, I’m glad you are here and glad your test for VEDS was negative ❤️
@@TranslucentOne glad to be here, no matter what type of zebra, I watch all your videos and find them all interesting and your strength and bravery inspiring. Ty for making content ❤️👍 btw, back to skin, I never that I recall had any teasing about my hands, veins etc- I had many friends who liked to “pet” my velvety skin, and one artist friend who was enthralled by my veins- thought I looked like a living art/medical diagram from his life drawing books!!
I like this look, maybe you are related to the invisible woman?
I have translucent skin and i often attributed it to just being pale or fair-skinned. My family members dismissed it and idk if I have VEDs to HEDS but i'm so scared. I've been crying all night because I feel so stupid for only just now googling this symptom at 25 and having EDS come up. I've been in physical therapy for my hip slipping problem and now i think I may have HEDS. I'm not hyper mobile in every joint so it's difficult to say either way but the pain and the skin with my other symptoms it makes sense. Idk what to do I feel like giving up. Thank you for posting this.
Hi Sarah! I’m so sorry you are going through this. ❤️ Have you asked your primary doctor about it?
You have so many great content, if you write ehlers-danlos on your titles, they will get more visualizations because of the SEO... thanks for sharing!
Thanks for the tip!
In Africa where I come from most often when people see translucent skin they attribute it to skin bleaching. I’m fair and have translucent skin so you can imagine how uncomfortable I am most often
Oh goodness yes. ❤️
Did it get worse as you age? My veins don't look that intense yet but I'm wondering if it'll change as I age. Thank you in advance!
Hey Michelle! My veins have always been like this. I am not sure if they will get worse as I age. ❤️
@@TranslucentOne thank you
I love it I workout and let me tell you when im at the gym i look on steroids
Hey. I have always had very visible blue veins on my whole body. No hyper mobility of any veins. Im also very pale. My mom has the same, her siblings too. My dad also does have. No history of vEDS in my family, no ruptures or anything that would indicate vEDS.
I suppose it is a genetic thing and doesn't necessarily mean vEDS or EDS.
Right- it’s a minor criteria of VEDS that indicates testing might be necessary if it’s present in combination with other minor features or a major feature. :)
But if you ever do become worried about it or wonder, please see a doctor for advice! :) I’m not one.
@@TranslucentOne I’m saying, translucent skin on itself shouldn’t be cause for concern right? As I said no vEDS in my family, no ruptures or anything like that. All my relatives get really old. Don’t have the facial features. Only thing I have is very superficial green/blue veins all over my body
I would ask your doctor for advice and you can check out the criteria at thevedsmovement.org/veds/what-are-the-signs/ hope this helps!
I noticed you have little bumps all over your skin. I do too! All over my neck, back, legs, etc. I have EDS too. Did they ever tell you if that was related to your EDS? Or maybe it’s a coincidence? Lol idk
No one has ever mentioned it as related to my VEDS :) maybe just a coincidence!
@@TranslucentOne yeah maybe! Haha I got excited because I’ve never met anyone else that has it. One guy I dated commented on it. He thought I was cold and that they were goose bumps. I hadn’t really thought about it before. Also, :) amazing content. I’ve been following you for a while, you’re so awesome ^_^ Thank you for all the fantastic information and for being so open.
You are so beutiful, I mean it. But I surffer of this on the face more then anywhere else, and on me it's just too much; no bulging veins but with time it is getting worse, I am so so pale so it shows even more. I am so ugly, I go outside with big huge sunglasses and cover my face with mask and hair. Th pity is that I was considered beutiful before (when I was more young it was moore under control). I am so unhappy. I look like the vampire from Vampire Diaries when they are hungry 😢
❤️
everyone looks like this with a thermal camera
Wait, this is a sign of VEDS?!
When combined with other minor features or major features, it can be an indication for testing. thevedsmovement.org/what-to-expect/diagnosis/
(This isn’t medical advice and I am not a doctor- if you’re concerned you should talk to your doctor about it) ❤️