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Scleroderma Lips


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#1 Clementine

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Posted 08 February 2007 - 03:54 PM

I am getting really tired of looking at myself. I have severe lines around my upper lip that often smokers get. I also have strange lines around my chin area. I am 39, so some of this is just aging but I am certain the majority is due to scleroderma.

Has anyone tried anything that has worked? I am thinking more extreme cosmetic procedures rather than creams, exercises. I know some have tried Restylane and now there is a new one I saw on the Today Show called Juvaderm. I know they are only temporary fixes, but at this time I need some help with my self esteem. As if an oxygen canula strapped across my face and the many red dots around my face are not enough, I have this ugly lip lines. I've even had people ask me if I smoked a lot. And, no offense to any smokers out there...I understand the addiction....it's just I do not like the look. I know I can do nothing about the red dots (my tangelos I call them) or my oxygen so just maybe the lips can be fixed.

Please post if you know of anyone who it has worked on.
Jennifer

#2 Guest_Sherrill_*

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Posted 08 February 2007 - 05:38 PM

Hi Jennifer,

There is a section on www.sclero.org about Collagen and Scleroderma.

It covers the lip problem, and says in part:
Scleroderma Lips Deep lines around the lips worry many scleroderma sufferers but unfortunately collagen injections and laser treatment are not advisable as they may cause scarring.

Also: Patients with certain connective tissue diseases may have an increased risk of severe allergic reactions to collagen injections. These connective tissue diseases include, but are not limited to, rheumatoid arthritis, scleroderma, and juvenile rheumatoid arthritis.

Have a look at the page, and whatever you do, please be careful, as you may end up worse than you started!

Warm hugs,

#3 Shelley Ensz

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Posted 08 February 2007 - 05:42 PM

Hi Jennifer,

There might not be much that can be done, if it is part of the disease process (which it very likely is.)

See: Scleroderma Skin Involvement. And particularly this section:

Scleroderma Lips Deep lines around the lips worry many scleroderma sufferers but unfortunately collagen injections and laser treatment are not advisable as they may cause scarring. Tightening of the skin of the face may lead to microstomia - a small mouth. Facial and mouth exercises may help. "Disappearing lips" can be a very upsetting cosmetic problem and a reputable plastic surgeon may be able to perform an operation called a mucosal advancement. Royal Free Hospital (Also see: Dental Involvement)

I'm sorry that's not very good news. On the positive side, it really is true people notice facial expression far more than they notice facial features. You may notice that smiling makes the grooves disappear or at least be less noticeable. Frowning, or lack of expression, makes them more prominent.

So although it seems very trite, the best treatment for scleroderma lips is to smile! It is a good stretch for the tight skin, and it distracts people plus brightens up their day at the same time.

Lip thinning can be covered up (a little) by using a lip liner the exact same shade as lip color to extend the lip area -- and the closer both of these are to your natural lip color, the better -- then if/when the lipstick wears off the lips, the liner will not be noticeable, and it looks as though the lips are larger and fuller.

Telangiectasia can be covered up well with DermaBlend cosmetics, or with my personal favorite, which is a mineral (brush on) foundation. A properly matched mineral makeup looks virtually invisible and is extremely easy to brush on. Some brands are anti-inflammatory. Mine covers all sorts of my imperfections, including telangiectasias, rashes, freckles, moles, and even facial (and eye) psoriasis.

Distraction is also one of the major ways to improve looks. If you don't want people looking at the cannula, wear a lively hat, or a bright scarf. My husband, Gene, wears the OxyView glasses, which deliver oxygen through tubing in the glasses, so he doesn't have a visible cannula.

Also, wearing stronger eye makeup can draw the attention to the eyes. Lucky for nearly all of us, the eyes are the #1 feature for sexual attractiveness...and eyes brightened up by a glowing smile simply can't be beat!
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#4 barefut

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Posted 08 February 2007 - 09:17 PM

Hi Jennifer,

I have the same lines. I thought it was my punishment for smoking for 8 years. (10 years smoke free now!)

I also have microstomia pretty bad, pretty much no upper lip and I'm getting the lines around my chin too.

Oh, and another fun thing, sometimes I drool. Yep drool. It's subtle right now and not very often but I can't wait til I need to wear a bib! :blink: Brushing my teeth isn't pretty either because I can't close my lips around my sonic toothbrush. I brush in the shower. :rolleyes:

I HATE looking in the mirror! It's not even me. I feel like a freak sometimes and will just break out in tears during my morning routine.

I'll bet all my ranting is making you feel better huh? I'm sorry! Just wanted you to know, I know how you feel. And thank you for bringing up the subject because I have always wondered the same thing about ways to fix it, or hide it.

And yea we know we're beautiful on the inside and that's what counts......but it's no consolation.

By the way, you are beautiful on the outside too!

Love, Barefut

#5 Margaret

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Posted 09 February 2007 - 02:13 AM

<<Oh, and another fun thing, sometimes I drool. Yep drool. It's subtle right now and not very often but I can't wait til I need to wear a bib! >>

Hi Barefut......I had to chuckle at this. My son, Gareth, has been drooling horribly the past few months. We tease him about being like his Newfie!!! I am also glad someone mentioned something about the lips. Gareth's upper lip seems to be disappearing like it's going to the inside of his mouth. I didn't know that was Sclero related.

Jennifer.....sorry you're feeling so down about your looks. You have got to be such a wonderful, sweet person on the inside. Aren't you the one that is getting married? Sorry, being new here, I forget all the different lives invovled.

Take care, Everyone.
Margaret

#6 susie54

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Posted 09 February 2007 - 02:17 AM

I have those awful lines and lips especially bottom going in or disappearing. I am like you barefut, I don't even want to look in the mirror lately. I understand that you alot younger than me and that is hard. BIG HUG> Susie54

#7 nan

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Posted 09 February 2007 - 03:51 AM

Jennifer,
I have been noticing more lines everywhere on my face. I am much older than you, I will be 50 in March. I also have noticed a lot of dryness in my skin. I have Sjogren's too so I don't know if it's old age, Sjogren's, or Scleroderma. I don't know of any treatments.
I was born with a birthmark on my face that started out small and kept growing. By the time they did surgery it pretty much covered one side of my face. I had plastic surgery and the scar is right big. Growing up was quite difficult because people are so cruel. Dermablend helps. Just the other day I was speaking with my mom about what scleroderma can do to your face and she said that won't seem bad to you. I asked her why and she said because you grew up with your scar. I was like oh yeah!, but for some reason I still think it will be bad because the damage scleroderma can do hurts and my scar never hurts.
I do firmly believe that it is the beauty on the inside that emanates through our eyes and smiles that makes a person beautiful! I know so many people that I think are beautiful. When other people first see them they might not think so because they only see them. They don't know them. I hope that this makes sense.
From your picture I would say that you're beautiful. From your posts I can also say that you're beautiful. At this point in my life I like the inner beauty best because it never changes.
Sorry I got off on such a tangent. Please give yourself a break and don't let this bring down your self-esteem. You're an awesome person!
Nan

P.S. I also had gray hair prematurely. I considered that distinguished. :D I think of my wrinkles as adding character. :D

#8 Heidi

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Posted 09 February 2007 - 03:52 AM

Hi,

I too have those yucky vertical lines surronding my lips (I think Vee called it purse lips!). I have wondered if it was due to scleroderma (I don't think I have any thickening or hardening other places on my face...although for the past several months in the morning my face feels really numb and like my tongue is too big for my mouth) or just normal aging. My skin seems to be hardening/tightening along my index fingers, but other then that I don't really seem to have skin involvement and so I just wonder about my mouth!

Warm wishes,
Heidi

#9 Karenpi

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Posted 09 February 2007 - 06:10 AM

Boy can I relate! I'm 59 so I can use "age" as my excuse:) I also have used makeup to cover up my "red polka dots" so I guess it comes with the territory. I agree with others that what radiates from a person usually has a bigger impact than what is outwardly visable. You have a great day today!

#10 kelowna52

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Posted 10 February 2007 - 06:40 AM

I'm sorry Jennifer, your feeling down. I also have alot of the red on my face and alot of scaling. My password for some of the clothing stores I shop at, is lizzardlegs. The scaling is on my legs as well.

I have a couple of questions, for those of you, who use Dermablend makeup. I was wondering, #1 where do you buy it and #2 will it go scaly on my skin? I have tried so many differant makeups but they all make the scaling on my face worse. Yesterday I was in a store again, Yes I know, I can't stay away. I spoke with the girl who was manning one of the cosmetic booths. I asked her if there was perfume or alchol in their products and she said yes there is, so I can't use any of the store brands, because all of the ones I've asked, all contain these things.

I'm sorry, back to you Jennifer, you look like a beautiful young women, from your photo, so don't worry. I hear you're getting married, how exciting, congrats. I think all of us have to stay on track, try not to let this get us down, think of the positive things in our lives. I for one, have many, many things to be thankfull for. I don't have to work, which is a real plus, considering none of us know how we are going to feel from one day to the next. Have a great day all of you and chin up Jennifer.

Jackie S.

#11 Karenpi

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Posted 10 February 2007 - 08:41 AM

Jackie...my skin is also very dry and scales (especially in the winter). I have found a product that really works well for me. It was developed by dermatologists at Mayo Clinic in Minnesota. You can send me a PM and I can give you more specific information about it. I find that putting it on when I just get out of the shower and am still a little wet works the best. Hope this information is helpful. Karen

#12 janey

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Posted 10 February 2007 - 01:01 PM

Jennifer,
I always try to smile enough so that the lines aren't as visible and most of the time that works. Unfortunately, in the hospital the reality of the lines around the mouth became a reality when two technicians referred to my husband as my SON! Oh well - time for some more hair color and more smiles.
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)

#13 janet905

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Posted 10 February 2007 - 06:51 PM

hi jennifer,
I don't have the lines around my mouth yet ( except for a few age wrinkles) or thin lips but I have had restylane and captique injections to various lines and my lips. it works really well. it is hyaluronic acid , not collagen. I have had these treatments even before I knew about the sclero. botox too. so far no problems. my lips look pinker ( a good side effect of restylane) and much younger. I am thin so it helps plump up my face also. my rheumatologist has no problem with these treatments. hope this helps.
janet

#14 emmie

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Posted 10 February 2007 - 07:03 PM

Hi Jen,

I've got the lines around the upper lip, some funky kind of lines doing their own thing goin' every which way around the lower lip, which by the way I seem to be slowly sucking into my mouth.

I've had the same experience Janey mentioned in her post I.e. doctors mistaking my husband for my son; I've also had them mistake my sister for my daughter (she is 8 years younger but still...!!!!).

I got my first gray hair at 19. I was a dark brunette; almost black. I had to start coloring my hair at 27. Finally now at the ripe old age of 52, I have decided to give it up. My arm muscles give out washing my hair, blow drying and styling my hair. I am simplifying my life!

My point of all this talk about me is, find what works for you at this point in time for you Jennifer. When I was 39, it would have been finding a good cosmetologist and talking about how to minimize the lines. I agree with what Shelley said: it's probably a combination of a good product for that area along with concentrating on your other outstanding features. You are a super attractive person. And as everyone else has so rightly pointed out, it's our personalities that give our physical qualities their true beauty. And as the years march on, you'll find that different things will become important as far as looks go...it's really kind of funny.

And hey ladies 50 years and +, how about the new products of a certain major beauty company who just kicked off a new ad campaign using real women of the same age group?? The whole point being their is beauty at all ages and I think that applies regardless of whatever "condition/disease/blahblahblah" you might have.
We are all beautiful!!!

xoxo emmie
(I'm going to repeat that to myself 100 times every day :)

#15 Clementine

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Posted 12 February 2007 - 10:29 PM

Thanks everyone for the encouraging words. I feel the same way about inner beauty but it's still not fair. Why can't we have it all...ha ha!!!
I'll keep you all informed as to if and when I do anything about the lips. Yes, I am the one getting married and I am very grateful to have found someone that is willing to share this topsy turvy life of mine with me.
Thanks again,
Jen

#16 bowbec

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Posted 09 November 2007 - 09:28 AM

Jen,
You're beautiful just the way you are!
Becky
Diagnosed with Diffuse Systemic Scleroderma May 2005
Raynaud's, GI, esophagus, skin and lung involvement.

#17 Vee

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Posted 10 November 2007 - 11:41 AM

Hey Tang,

I'm with ya' on this one. I started noticing those ugly lines a few years ago. I know it's the "purse string" scleroderma mouth, but I still don't like it. I just try to keep a smile on my face to stretch the lines out. Doesn't work all the time! :P I've thought about the Rystalin(sp?) injections also, but they are only temporary, and I can't spend that kind of money on something that won't last. Maybe if I run into the wall or something, It might make my lips swoll up!!!! :blink: If you find a miracle, let us know.

I agree with the others, You're beautiful just the way you are!
Happy people don't have the best of everything, they just make the best of everything they have!

Warm and Happy to you! Vee

#18 barefut

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Posted 11 November 2007 - 03:00 PM

Wow! Take a look at how many views this thread has had since February, 1400!

Popular topic.

I have one deep line above my lip, it looks like a scar. The ugliest thing are the lines forming from the corners of my mouth down towards my chin. I look like a "dummy" for a ventriloquist's act.

Okay, I know I set myself up there.......watch it!