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Biomarker for Diffuse Scleroderma skin has been discovered!


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Losing The Wrinkles!


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#1 lizzie

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Posted 07 August 2007 - 11:35 AM

Just wondered if anyone has any advice on dealing (physically and psychologically) with facial skin tightening? Was diagnosed with limited in 2006 . In the last couple of months the skin on my face has been getting tighter. Although think I have pretty much come to terms with the scleroderma thing , I do from time to time get a bit emotional about the cosmetic changes ( don't really worry too much about the internal ones!). I think this is an aspect of the disease that is often not dealt with well by the rheumatology teams who are (rightly) more concerned with the internal changes. Would welcome your thoughts.
lizzie

#2 janey

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Posted 07 August 2007 - 12:21 PM

Lizzie,
Welcome to the forum! I read your introduction in the getting to know you thread. You sound like you are handling things quite well in spite of having to deal with a diagnosis of limited sclero.

I'm with you that it's the outside appearance that's the hardest to deal with. My worse feature use to be one of my best. I use to have big pouchy lips (the kind people get injections for). Now I have no lips and just a bunch of vertical lines surrounding the space that use to be lips. I don't have skin tightening so I still have the crows feet - which is fine.

We ran an article a couple of weeks ago about how appearance affects people with SSc. It's on our emotional adjustment page. It's the one that starts with "Appearance Self-esteem".

Again welcome! We hope you visit us often.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#3 Rachelle

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Posted 07 August 2007 - 12:32 PM

One member talked about how facial massages helped with her facial skin tightening. I would think maybe you could do this yourself and using a product like petroleum jelly to massage which may help?? Hope this helps.

#4 WestCoast1

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Posted 07 August 2007 - 03:44 PM

lizzie,
It looks like you received some good links and ideas for the skin changes. I also wanted to welcome you to the forums!
*WestCoast*

********

#5 lizzie

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Posted 07 August 2007 - 09:01 PM

Thanks for the replies and welcome. Rachelle- thanks for the suggestion , I saw that post too and have just started massaging witha facial oil. Seems strange though, all my friends are busy applying pro-collagen creams to minimise the wrinkles , while I,m desperately trying to stop mine disappearing! Many cosmetic companies now market lotons and potions that they claim are pro-collagen, perhaps they could start working on an anti-collagen one. Working on the principle that it keeps my mouth moving another 'therapy' I am trying is lots and lots of talking. doesn't do much for my work output (or that of my colleagues) though!
lizzie

#6 PrincessB

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Posted 07 August 2007 - 09:24 PM

Lizzie, I agree it's one of the most distressing aspects of scleroderma, I always used to get stressed about that and feel guilty that maybe I was being vain (until I got lung involvement and now have somewhere else to direct my stress - ha ha!). I suppose I always just look at my friends who are starting to get wrinkles and enjoy the fact that I'm not getting them. Although my lips are getting thinner and thinner, which is upsetting. It's hard when your friends who haven't seen you for a while say that you've really changed, but we all change as we get older I guess. There isn't really an answer to dealing with it, unfortunately. Thankfully my boyfriend and I got together after my face had already changed quite a lot and he says he prefers me now ;)
Diagnosed diffuse systemic scleroderma December 2005 (on my 30th birthday, as if turning 30 wasn't enough?!)

#7 barefut

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Posted 08 August 2007 - 03:24 PM

Lizzie,

I find myself in front of the mirror in tears from time to time. We need to grieve the way we were. It's not being vain.

Take Care,
Barefut

#8 kramer57

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Posted 09 August 2007 - 02:20 AM

Lizzie,
Like PrincessB said, we all change as we grow older, we just have different changes to get used to than other people. Two years ago I was buying that cream to get rid of some deep wrinkles . Now I have no wrinkles, and I'm trying to get used to my fat puffy face & aching cheek muscles. I wish I had some advice on dealing with it. When I look in the mirror, I don't look like myself anymore, and with the swollen cheeks when I try to smile it feels shaky and weird, so trying to smile at people doesn't feel natural anymore. It's hard to get used to. But I am still smiling, even if it does feel weird! :D
Karen

#9 Clementine

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Posted 09 August 2007 - 07:07 AM

I hate looking in the mirror too. I have actually gotten more wrinkles....and I am not sure if it's only from aging or partly from Scleroderma. I have major lip lines and my cheeks are sagging, complete with lines. What really bothers me are the lip lines. I've had people tell me I look nothing like my old pictures...and I don't even have the skin involvement. I understand how y'all feel. I need a face lift...LOL.
Jen

#10 lizzie

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Posted 09 August 2007 - 08:08 AM

Hi everyone , thanks for your input. Its really good to be able to share worries with someone who actually understands how I feel - my friends think I'm crazy worrying about lack of wrinkles! Karen - I think you made a very good point, If I was getting lines rather than loosing them I'd probably fret about it just as much.
Lizzie

#11 luvbnmom3

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Posted 17 August 2007 - 02:29 AM

I wish I had some good advice or words for you, I am only just recently dealing with a changing face, only I have no diagnosis, haven't been to rheumatologist in several months. I have vertical lines, more prominant on Rt side of upper lip, one afternoon I did a double take in the mirror because I saw a crabby looking lady in the mirror...not crabby though... just tight lipped with those lines. I notice in the morning sometimes I don't see them because my face is puffy, but for the most part of the day, I have this look on my mouth that looks like vertical lines & a horizontal indentation just above lips & then swollen eyebrows & eyelids sticking out & a smooth shiny nose. The lips bother me the most because I look mad. I have always had VERY young looking skin, I'm JUST 33 & people think I'm early 20's at most, I've even been accused of not being old enough to serve alcohol!

#12 Gidget

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Posted 17 August 2007 - 11:47 AM

Lizzie,
I agree with you -- it is hard to see your face change. I feel my worst feature is my lips. I went to the makeup counter and had them show me how to apply lipliner and lipstick to make my lips look as full as possible. I'm not sure how well it works but to me it makes me feel a little brighter and gives me the pick me up. Good luck with everything. REgards, Gidget

#13 lizzie

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Posted 17 August 2007 - 10:05 PM

Hi Gidget, I'm v impressed that you went to the make-up counter and asked for advice- I find the make-up counter ladies so scary! Will only do it if am with one or more friends for protection, otherwise end up buying loads of stuff I don't need/can't afford. I do feel better though when I make an effort with the makeup -Like others on this forum , have found that the mineral based powder make-up is really good. The biggest problem with the lips , apart from their gradual diapppearance, is that they are really dry, which seems to be made worse by most lip stick/glosses. My latest 'coping' strategy is exercise. Have decided that as there is not much can do about the face, will try and get my body in shape and do what I can re the general phsyical decline. Have now joined a gym and got them to devise me a gentle execise programme. So in a few weeks time hope to be fitter and a few pounds lighter (need to loose about 20 lbs to bring me to ideal weight). One of my work colleagues is a real gym bunny, goes every lunchtime , so she is now acting as my conscience and makes me go too. I (and my muscles) tire pretty quickly but am actually enjoying it so far. Who knows , if sucessful might post a before and after picture on here!!
Lizzie