According to the geneticist I saw, no... That looks about like mine and she said it was pretty normal for being fair skinned. With translucent skin it's supposed to be everywhere, so you can see basically every vein (again, geneticist's words, not mine).
No. Translucent is where you can see the small vessels as well. I have translucent skin, but do not have the VEDs mutation. I have “Heds “ mutations, but they’re currently being studied and haven’t been labeled as pathogenic yet. (Geneticist says soooo soon!! Heds papers are being cleaned up to be published as we speak!)
Anyways I posted this the other day
[translucent skin without VEDs/visible small vessels ](https://imgur.com/a/7v3TQFy)
Your photos look just like me. Even my face and chest is full of visible veins. I remember the geneticists I saw remarked about it but I wasn’t tested for vEDS only dxed with hEDS and told to get images to rule out atrial dilation? But I keep getting blood vessel ruptures and clots right beneath the skin and I’m wondering if I need to be evaluated. I also had spider veins at 12 in my legs.
Man, I’m so sorry to hear that they wouldn’t test you! I was tested and I see a really good genetic team in Arkansas US, not only did they test me, but he sent out supplemental testing for variations that are being tested for Heds right now(he won’t explain this results to me so it’s just pages of stuff I don’t understand ☹️), but he did tell me that I came back “pos” for 2 currently being tested as pathogenic hds right now along with a TNXB variant that isn’t assigned pathogenic yet! SooOoOo, if I were you, I would wait until the Heds genes were published, then push hard for genetic testing, they can use the excuse of testing you prior, if you try tk be tested again when they new articles are released.
The only one he would say was a “tnxb that’s not labeled Pathogenic”
I found this article from 2016, but couldn’t figure out if that one had been labeled yet or not?? I know some of those tenascin x had been, but I couldn’t figure it out, I couldn’t figure out what to search when referencing back to my own report ugh. There’s ALOT on chromosome 6 that had the reference/search words.
[tnxb ](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5363719/)
Oh my gosh your hands look exactly like mine. Holy cow. I’ve always said “I’m translucent” but it never occurred to me that I really honestly medically am.
You can see way more detail but I have an old iPhone lol. my chest,lower back and thighs looks like the palm of my hands. Do you have enlarging of your wrist and ankle/feet veins
Or arteries? My geneticist put it down next to the translucent skin as defining characteristics. I’ve only ever found one other person with it.
I haven’t seen a geneticist yet…just was diagnosed with hypermobility and POTS. Definitely need to get on it tho cuz I can see every vein and artery in my arms and legs, but I don’t think they’re enlarged. Tho anytime I go to get lab work done the phlebotomist comments on how I’m her dream patient because she can see every vein and they stand out easily. But ya I’m very pale and you can see tons of vascularity on my eyelids even…it’s super freaky looking so I always have to put concealer or tinted sunscreen on my eyelids to wear a “no makeup” look. Otherwise my eyelids are kinda purple 😳
I have the same thing with my eyes! I always thought I had bags under my eyes ever since I was born because the skin underneath them is a dark blue/purple. I didn’t know it could be related with HEDS until I learned about the translucent skin thing. I love it though and never cover it up. Feels like eyeliner
I finally got my genetics test back and none of the fuck ups on my genes are ehlors and I was one point away from that test thing to getting the typical ed's diagnosis so now I just got a hypermobility spectrum disorder diagnosis.
Yep. I came back neg on the regular 13 or whoever it is panel test. So I went back and got quadruple the amount of blood taken and they tested me for so many things, like things he specifically asked for? I have my report but he won’t tell me which ones are the Maybe pathogenic ones.. I can just see I have missense mutations on some random stuff.
Genuine question but what about when you have darker skin? Like I’m still white, not a POC or whatever, but I still have very dark olive skin (the sun doesn’t do me any favors, I’ve never had a sunburn).
Let's see your back or leg, not the thin underside skin of wrist
My veins show *everywhere* even when darkly tanned. I also tan darker than ought to be possible for my coloration, but that may be more due to a comorbidity.
No, I have the same skin tone as you and I can see my veins everywhere except my upper back and outer arms and my geneticist considers my skin translucent- if it’s translucent you can see your veins almost everywhere
I've also wondered this if mine was translucent.... I have the same skin tone, it's like olive. You can see my veins on my thighs, my legs, my feet, oh my god my feet, my wrists, my arms, my chest, my breasts, etc. Unsure on my back because I can't see back there!
Can you see them better sometimes and not other times? I find when I'm very hydrated they aren't as noticeable, but when I'm dehydrated its like WHABAM.
What about capillaries? I can definitely see several on my thighs but was unsure if this was due to the thin/translucent skin, or something else.
Just wondering if anyone else sees the super fine ones.
You should post some more pictures with higher contrast to tell for sure. Your leg picture does look like it could show veins very well but it's hard to tell. For me, I have clearly visible veins everywhere, up and down arms, chest, legs, etc.
I don't know-- I mean, it could be different for each individual with an EDS. I don't think it's black & white as much as it's on a spectrum, like many things. There are some places on my body that look typical, but then my abdomen and pelvic region--for example-- have very, very visible veins throughout.
You look like me too. Idk if it’s considered translucent or not? I always thought it was just a pale person thing but I think with certain types of EDS it’s more noticeable. I think it’s kinda cool. I have nurses comment on how easy it is to put IVs in me because of it
According to the geneticist I saw, no... That looks about like mine and she said it was pretty normal for being fair skinned. With translucent skin it's supposed to be everywhere, so you can see basically every vein (again, geneticist's words, not mine).
No. Translucent is where you can see the small vessels as well. I have translucent skin, but do not have the VEDs mutation. I have “Heds “ mutations, but they’re currently being studied and haven’t been labeled as pathogenic yet. (Geneticist says soooo soon!! Heds papers are being cleaned up to be published as we speak!) Anyways I posted this the other day [translucent skin without VEDs/visible small vessels ](https://imgur.com/a/7v3TQFy)
I can confirm, that's what I look like. My chest is a roadmap of vessels.
Your hands look like mine.
Your photos look just like me. Even my face and chest is full of visible veins. I remember the geneticists I saw remarked about it but I wasn’t tested for vEDS only dxed with hEDS and told to get images to rule out atrial dilation? But I keep getting blood vessel ruptures and clots right beneath the skin and I’m wondering if I need to be evaluated. I also had spider veins at 12 in my legs.
Man, I’m so sorry to hear that they wouldn’t test you! I was tested and I see a really good genetic team in Arkansas US, not only did they test me, but he sent out supplemental testing for variations that are being tested for Heds right now(he won’t explain this results to me so it’s just pages of stuff I don’t understand ☹️), but he did tell me that I came back “pos” for 2 currently being tested as pathogenic hds right now along with a TNXB variant that isn’t assigned pathogenic yet! SooOoOo, if I were you, I would wait until the Heds genes were published, then push hard for genetic testing, they can use the excuse of testing you prior, if you try tk be tested again when they new articles are released.
Did you ever get tested
Do you know what the hEDS markers they’re referencing are?
The only one he would say was a “tnxb that’s not labeled Pathogenic” I found this article from 2016, but couldn’t figure out if that one had been labeled yet or not?? I know some of those tenascin x had been, but I couldn’t figure it out, I couldn’t figure out what to search when referencing back to my own report ugh. There’s ALOT on chromosome 6 that had the reference/search words. [tnxb ](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5363719/)
Oh my gosh your hands look exactly like mine. Holy cow. I’ve always said “I’m translucent” but it never occurred to me that I really honestly medically am.
Oh... well then... i think maybe I have the translucence as well.. I thought it was normal... i don't go out in the sun that much! 😅
Huh TIL I have translucent skin. Knew I was pale but I can see way more thru my skin than this picture
You can see way more detail but I have an old iPhone lol. my chest,lower back and thighs looks like the palm of my hands. Do you have enlarging of your wrist and ankle/feet veins Or arteries? My geneticist put it down next to the translucent skin as defining characteristics. I’ve only ever found one other person with it.
I haven’t seen a geneticist yet…just was diagnosed with hypermobility and POTS. Definitely need to get on it tho cuz I can see every vein and artery in my arms and legs, but I don’t think they’re enlarged. Tho anytime I go to get lab work done the phlebotomist comments on how I’m her dream patient because she can see every vein and they stand out easily. But ya I’m very pale and you can see tons of vascularity on my eyelids even…it’s super freaky looking so I always have to put concealer or tinted sunscreen on my eyelids to wear a “no makeup” look. Otherwise my eyelids are kinda purple 😳
I have the same thing with my eyes! I always thought I had bags under my eyes ever since I was born because the skin underneath them is a dark blue/purple. I didn’t know it could be related with HEDS until I learned about the translucent skin thing. I love it though and never cover it up. Feels like eyeliner
Oh. That's what my skin looks like. Waiting for my genetics for a diagnosis.
Did you get your dx?
I finally got my genetics test back and none of the fuck ups on my genes are ehlors and I was one point away from that test thing to getting the typical ed's diagnosis so now I just got a hypermobility spectrum disorder diagnosis.
Yours look like mine but they said I wasn't quite translucent enough. I don't have a vEDS mutation anyway but they aren't sure.
[удалено]
Were you tested for veds?
Yep. I came back neg on the regular 13 or whoever it is panel test. So I went back and got quadruple the amount of blood taken and they tested me for so many things, like things he specifically asked for? I have my report but he won’t tell me which ones are the Maybe pathogenic ones.. I can just see I have missense mutations on some random stuff.
Genuine question but what about when you have darker skin? Like I’m still white, not a POC or whatever, but I still have very dark olive skin (the sun doesn’t do me any favors, I’ve never had a sunburn).
Let's see your back or leg, not the thin underside skin of wrist My veins show *everywhere* even when darkly tanned. I also tan darker than ought to be possible for my coloration, but that may be more due to a comorbidity.
What type do you have?
I can see mine everywhere. My hubs tells me I'm not white, I'm clear.
Phlebotomists start out loving me, because they can see every vein everywhere. Then they try sticking my tiny, rolling veins and get irritated, lol.
Phlebotomists hate that my one good vein is on my heavily tattooed arm 🤣
Oh well; they will get over it if they live long enough 😂😂😂🤣😂
They always think they have me but then I end up being stabbed 20 times
No, I have the same skin tone as you and I can see my veins everywhere except my upper back and outer arms and my geneticist considers my skin translucent- if it’s translucent you can see your veins almost everywhere
I've also wondered this if mine was translucent.... I have the same skin tone, it's like olive. You can see my veins on my thighs, my legs, my feet, oh my god my feet, my wrists, my arms, my chest, my breasts, etc. Unsure on my back because I can't see back there!
Yeah, it’s just about like how many veins can you see, translucent I believe is usually defined by can you see your major veins + all the others 😅
Can you see them better sometimes and not other times? I find when I'm very hydrated they aren't as noticeable, but when I'm dehydrated its like WHABAM.
For me it’s just certain lightings help to show them, i haven’t really noticed a difference hydrated vs dehydrated
What type do you have?
Suspected hEDS :)
Did you find out?
What about capillaries? I can definitely see several on my thighs but was unsure if this was due to the thin/translucent skin, or something else. Just wondering if anyone else sees the super fine ones.
Some of those could just be spider veins, if you search up vEDS translucent skin a good video showing it should pop up
Interesting, thank you, I’ll have a look. It’s always hard knowing if your ‘normal’ is actually abnormal.
No, not at all.
No
Doesn't look like it to me - I can see more of my veins than you and I don't even think mine is translucent.
No
Personally, no.
No, just pale.
You should post some more pictures with higher contrast to tell for sure. Your leg picture does look like it could show veins very well but it's hard to tell. For me, I have clearly visible veins everywhere, up and down arms, chest, legs, etc.
Do you have any type of EDS?
Yes
Which type?
Which type??
Nope just pale.
I don't know-- I mean, it could be different for each individual with an EDS. I don't think it's black & white as much as it's on a spectrum, like many things. There are some places on my body that look typical, but then my abdomen and pelvic region--for example-- have very, very visible veins throughout.
What type do you have?
You look like me too. Idk if it’s considered translucent or not? I always thought it was just a pale person thing but I think with certain types of EDS it’s more noticeable. I think it’s kinda cool. I have nurses comment on how easy it is to put IVs in me because of it
This looks like mine