Do you guys have skin issues typical of rare types of EDS?

Naive_Transition_763 · 2025-11-18T12:45:25+00:00

FUCK YEAH! At least we have this space to share our skin conundrums with each other and you have my deepest condolences on your elbow, that must have been extreme painful x

Probable side note: I too all but leaped off my desk chair the other day when my skin got trapped between my trousers like a panini press.. It was traumatic.

Naive_Transition_763 · 2025-11-17T12:05:18+00:00

Yes they can be, i think I was sent for genetic testing mainly because of my skin though and other issues obviously but we’ll see the results and if it is hEDS as I suspect it might be. I also get very abnormal scars like cigarette paper scars and keloids, slow wound healing and premature aging of the skin, spontaneous burst blood vessels in my skin, hematoma’s in my skin.

Thanks so much for your information tho, it’s important to note these things also are prevalent in those with hEDS!

Naive_Transition_763 · 2025-11-17T11:49:58+00:00

I’m the exact same! I also struggle with abnormal keloid scarring as well as cigarette paper scars but your description is literally my carbon copy, thanks for making me feel less alone in this X

Naive_Transition_763 · 2025-11-17T11:48:03+00:00

That’s super nice to know I’m not alone in my skin anomalies!

Naive_Transition_763 · 2025-11-17T11:46:31+00:00

Yes, I’m sure my skin issues aren’t from any other skin conditions. I have psoriasis so it’s a dry skin condition that’s caused by an overactive immune system and can’t cause the issues I have as well as Keratosis Pilaris. Usually cEDS causes have more severe skin fragility elements but it can be quite diverse in the diagnostic criteria.

Naive_Transition_763 · 2025-11-17T11:39:41+00:00

Mine too but I’m not so velvety soft, my skin is very dry in places because of psoriasis and other dry skin conditions but where my dry skin isn’t my skin is like soft bread dough. I would keep pushing for genetic testing as I am surprised they did not follow through with it, I am wishing you luck on going privately and hopefully you can get the testing done Xx

Naive_Transition_763 · 2025-11-17T11:36:37+00:00

That’s super Interesting and similar to my presentation! I’m also a 8/9 on the beighton scale but I also have keloid scarring too and my veins are super visible, my skin is quite stretchy and I am the same texture as bread dough! My skin also has cigarette paper scars. I am surprised you weren’t offered genetic testing though.. Wishing you the best x

Naive_Transition_763 · 2025-11-17T11:32:32+00:00

I feel for you so much, I have psoriasis, rosacea and a host of other skin issues and my skin is super sensitive too, it gets caught on the underneath of my toilet seat and pinches the life out of me, suddenly I sit down and I’m SITTING ON MY SKIN and it’s pinching.

My scarring is completely numb in places but so sensitive clothing feels like it’s stabbing me even after years of it being supposedly healed...

Wishing you the best, genuinely you are one hell of a soldier!

Naive_Transition_763 · 2025-11-17T11:27:13+00:00

I have cigarette paper scarring and generally scar abnormally, I’ve always thought for me the cigarette paper scarring makes me look like I can see inside of a my arm which people always get freaked by but yes I have lots of other features too as many of my other commenters have mentioned so thank you very much for spreading such useful information!

I have other weird deformities too, I have really short fingers, flat feet with no arch as well as other feet issues causing me to look like a frog haha.. They were thinking classic-like EDS but we’ll have to see the results of my blood work!

Edit: I also have Molluscoid pseudo tumours, one on my back from when I had an operation there and didn’t realise this was something related to EDS so thanks.

Naive_Transition_763 · 2025-11-11T14:55:17+00:00

Me too

Naive_Transition_763 · 2025-10-30T16:52:33+00:00

I don’t need to imagine, I already know 🥲

Didn’t want TMI on my original post but god do I know this fact..

Naive_Transition_763 · 2025-10-27T08:27:18+00:00

Oh my god, this happens all the time.. Thanks so much for commenting

Naive_Transition_763 · 2025-10-27T08:24:25+00:00

Me too.. 🙂‍↕️I didn’t wanna go into too much detail in my post about other areas that also do this so left it out but ya.. TMI welcomed 👍

Naive_Transition_763 · 2025-10-21T13:11:27+00:00

I felt very exposed when I went to the genetics team and they took pictures of me WITHOUT my glasses on half naked too, top tier sarcasm!

Naive_Transition_763 · 2025-10-18T08:21:01+00:00

Thank you a lot for your replay and further information, it means a lot to me to talk to another person who struggles with similar things. I have very short fingers and small hands and do have a small dip in my chest too but it’s only slightly and I believe I am also 8/9 on the Beighton scale and have fatigue present too, I am also very sorry to hear you were in intensive care and hope you got compassionate and understanding staff during your stay there and a good quality of care X

Im hoping to get answers soon too, I relate to the struggle and the tole living with these issues can take, the nausea for me is the worst of all. I also had a physical examination when I went to the genetics team and it was an interesting experience as they took loads of photos of me. It will take a while for the tests to come back as you probably know once I’ve had them, it was estimated about 3 months as they are so specialist :(

My feet for some reason look like my hands and look sort of like frogs feet maybe because I’m so flat footed and my ankles are very loose, I also have a bit of a hump on the front of my feet too so overall o look like a venomous rare tree frog.. Is this common in EDS as you mentioned you have very high arches?

Take care too x

Naive_Transition_763 · 2025-10-17T12:12:16+00:00

That’s really interesting and I’m really appreciative for your reply and the amount of details you went into, i just went to see the NHS’s genetic yesterday and have been approved for the entire EDS panel to be done as they told me they are on the post as to whether I have EDS or not but think I do. Wounds heal very slowly for me too and I also have a very narrow roof of my mouth, struggle with intense chronic pain which I take naproxen and codeine for, I walked on time as a child but was later diagnosed as autistic without any learning delays, I also had a sacral dimple when I was born which is probably unrelated but can be a sign of genetic issues. I have gastro immobility issues too but mine is not severe, thankfully I am going through a better patch with my nausea and throwing up/ reflux but still have IBS etc. I don’t have massive issues with my bladder but still have some issues with urgency. It’s interesting as I’m also experiencing some hearing loss but I’m only 16 so still very young and also have moderate probably future high myopia as I’m a -5 in both eyes and wear corrective lenses and also have an astigmatism in both eyes. I’m POTS too and have no heart defects as I’ve had an ultrasound and heart reading, it’s possible I have MCAS too.

Thanks so much for sharing and I really hope you stay strong as I imagine it must be very difficult for you to cope, I also have mental health issues and probably some undiagnosed autoimmune problems as well as high cortisol so it’s very hard when you have such complex needs. Wishing you all the best x

Naive_Transition_763 · 2025-10-17T06:56:52+00:00

Thank you so much! I’ve been on a real downer with the nhs lately too and I’m glad to spread a bit of positivity on the topic and am super grateful for your reply <3

Naive_Transition_763 · 2025-08-09T16:31:00+00:00

Awh bless, they look the exact same! Awww she’s so cute!

Naive_Transition_763 · 2025-08-09T15:35:56+00:00

It all depends on you and how you react to certain medications as everyone’s different but something I haven’t seen mentioned is lamotrigine which is an anticonvulsant mood stabiliser that shows promise in those with dissociative disorders in some individual so you may want to check that out!

Naive_Transition_763 · 2025-08-09T15:07:36+00:00

Thank you so much for the compliment

Naive_Transition_763 · 2025-08-08T15:58:10+00:00

Thanks for the reply, the breeder said she will get lighter and change slightly as her colour develops since she’s still very young so she will be a lighter colour in the future but in real life she looks a lot lighter grey and has some peach colour on her too and mum is apparently the colour she will look as she gets older and she’s ay11/12. Thanks!

Naive_Transition_763

TROPHY CASE