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Ehlers-Danlos Support UK
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Stretchy eye and face skin... HELP

My eds is making my facial skin more elastic as I age.. My upper eyelids are starting to hang over my eyelashes and my forehead is stretchy.. My lower eye lids are black and can stretch out wards past my nasal bridge... I have taken care of my skin and joints but all of a sudden my facial skin has lost all its tone.. I'm 40, anyone else noticed anything similar? My eds was mainly joint dislocation and general bendy-Ness and pain (I have RA too) the skin thing is new.. I think it's been going on for a while but my youngest daughter is ASD and I've not noticed I looked rubbish till she was doing better... My eldest daughter is eds too

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Hi Asiaohara

I can relate to your eye problem! My EDS diagnosis came 9 yrs ago when I was 52! The usual β€˜light bulb’ moment that we zebras get

Prior to diagnosis I always hated my eyes as I always looked so β€˜old’

Party tricks included stretching my eyelids down to my cheeks. I was also plagued with dark circles which I inherited from my Dad

Post diagnosis I realised that stretchy skin is a sign in hEDS.

5 years later when I was reading Fragile Links magazine I saw a page of photos of people on the medical advisory, board and one of them included a plastic surgeon.

I contacted him just for advice and he agreed to see me. I guessed he knew more than most about eds and possible complications that other surgeons

Long story short I decided to part with some money and get my eyes done as they were getting me down so much.

The results were amazing! He took an inch from each top lid and three quarters of an inch from below each lid

It took 10 years off me and even took away the appearance of my dark circles.

The consultant left my sutures in for 10 days instead of the usual 5 - just to ensure healing due to eds

He said I would get 3-5 years if I was lucky and I would say that it is only in the last 9 months or so I have noticed some creepiness/ stretching underneath, which I would expect for someone my age

The top lids have stretched somewhat but nothing like they were.

I am getting older so I expect them to stretch anyway but I dread to think how they would have been if I hadn’t had them done.

Sadly, the consultant I had has since retired, or if I could have afforded it I would have definitely seen him again if I felt they had got to where they were again.

Prior to my surgery I used A cheaper option !

I used to buy little clear plaster from the internet that made to hold the lids back

Just google β€˜eye lid tapes’

I wore them for years and will probably again when I need to!

Hope this helos

BW x

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My skin changed drastically around the same age, changing from the smooth velvety skin which often comes with eds to red and coarse and thin - with the dividing line across my face. If I pull the skin on my forehead apart, it is now so thin that I can feel it tearing.

I have discovered just a couple of things really:

(Assuming you are female) make up can cover up a multitude of issues, including skin discoloration. I would go to a few make up places and ask for several makeovers and then buy cheaper products and experiment.

You will see your flaws and imperfections much more than other people see them. They may not even notice!

Also, if you have not already done so, look at your diet and lifestyle and try eating lots of veg, plus I recommend a general vitamin and iron supplement and especially a source of vitamin D as we do not get enough sunshine in the UK to make vit D, and it is well known that most UK people are vitamin D deficient.

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Hi Jay66,

Great reply! sorry to hear about your forehead. I think my Italian bloodline has saved me from tearing like that but do tear from sutures.

This used to be LadyUponTheLake in my previous account but I recall your username.

Be well!

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I do recall you - nice to hear from you. I take feroglobin PLUS now for the iron, B12 and vitamin D, all of which we edsers need more than most people.

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Have you ever heard of anyone with acne scarring? Trying to research but not finding a lot of help.

I had dermabrasion when I was mid 20's and scars cam back with a vengeance, stitches wouldn't hold from surgery. I was told in the states it was EDS but here it's JHDS. But no one seems to acknowledge acne scarring all over body. I'll write a post.

Be well Jay66

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I have heard of quite a few treatments for acne scarring, but you need to be super careful and I would have a trial first. I had laser treatment (for something else) and it made my skin significantly worse by accident, probably due to defective collagen.

I don't think it is available on the nhs usually, so you'd be looking at private health.

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Yes I pain $5000 in my 20's for dermabrasion Nd they stitch together the ice pic scars. But stitches ripped. Took ages to heal and not long after I was back at square one without severe acne. So I don't think laser would touch this. Just wondered if you heard of anyone else who had such problems really. I'll put a post up.

Thanks Jay

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I think I may look in to my eyelids getting done.. They are very hooded and folding over to my lash line, I'm thankful you guys replied made me realise I'm not alone ❀️❀️ lots of love guys x

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