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Amanda Thorpe

Anyone seen my top lip? No? Me either!

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Hello All

 

If you'd told me 6 months ago I'd be calmly typing this I'd never have believed it, adaptability I guess or is it acceptability?

 

Well my mouth is smaller as is my top lip, this seems to have happened in the space of a few weeks. Needless to say I don't want the sclero mouth even if there are varying degrees of it. What am I saying, I already have it to a varying degree!

 

Recently I met some sclero ladies I'd not seen before and even I wanted to peek under the table to look for the bearded lady and I have sclero! It was a bit of a shock to think I could have been viewing my future as one lady had no lips to speak of and a tiny mouth, one a gummy smile due to lack of top lip and the other just thin lips and a small mouth. In reality I know no one else even noticed all of this but I was acutely aware of it.

 

I know that no one can predict anyone's disease progression, I was just curious how this issue effected others, when did it start, how did it progress and is there anything I can do to change the outcome?

 

Sclero has taken my mobility, my good health, disfigured my hands, arms, legs and feet, it ain't gettin' my smile as well!! :angry: or should I say :) :)

 

Take care

 

Amanda


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Amanda,

I found this to be one of the harder physical manifestations to accept. Like those ladies, I too have a very tiny mouth, no more upper lip, and the vertical 'purse string' lines. My family and friends assure me that it makes no difference to my appearance but it's something very personal and I am conscious of it. My smile used to be one of my best features and to lose it was very hard on me.

I guess it's been the past year and a half, about 3 years into my diagnosis that it started, but my symptoms were very quick onset. I knew it was coming when the sclero spread to my face, and I found I could no longer bite into a sandwich, eat a banana or even a popsicle.

But as you say, there are degrees of adaptability and acceptance, and it's something many of us have had to come to terms with regarding sclero. Now, as long as my heart keeps beating, I'm a happy camper and I can handle anything else that comes along the pike. In the grand scheme of things I suppose a small mouth is no great shakes but it's still hard for us when it happens.

All I can say is I hope you don't have to deal with it but if you do, I am sure you will do it with grace and the support of the people who love you.

Good luck,

Mary in Philly


Diffuse sclero; diabetes; hypertension; GERD with Barrett's

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Thanks Amanda!

 

You started my day with a giggle. :lol: Everyday when I look in the mirror I ask the person I'm looking at "Where did your lips go?" I use to have the puffy lips (kind of like some of the fingers I have now.) Now I have no upper lip and a tiny little bottom lip. You can go to the Perioral Dermatitis page to see my lack of lips (the rash you'll see in the picture is now gone thank goodness.) Unfortunately, the lips (or lack there of) still looks the same.

 

You implied that losing your lips might cause you to lose your smile - well, that is definitely NOT the case. In fact, I have always had people tell me (all my life) what I beautiful smile I have. I still hear it! The other day I ran into a lady I haven't seen in 10 years. When she walked up to me she said that she didn't recognize me until I smiled then she knew exactly who I was. :) So lips or no lips - keep smiling!!!!!!!!

 

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)

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Hi Amanda,

 

Actually, around here, thin or disappearing lips are the latest rage! Ignore all that Hollywood stuff -- around here, you're In with the In crowd at sclero.org if your smile is a bit smaller or less puffy than before.

 

My whole mouth has gotten smaller. It has caused tooth loss from the back, towards the front. So I have a Magic Partials (now you see my teeth, now you don't!) and thousands and thousands of dollars in dental work the past few years, compliments of Sjogren's and scleroderma. The truly wonderful thing about it though, now that my restorative work is done (at least, for the time being) is that my teeth look better than ever.

 

And thin lips? When you're so inclined, you can work on make-up tricks to enhance them for special occasions, you know, like raise a hive of bees in your backyard <just kidding!>. Uh, I mean, like using lip pencil that matches your lip color, and this is one case in which you want to tune out the omnipresent voice of your kindergarten teacher and draw *outside* the lines!

 

But otherwise, Janey's right. I doubt anyone has noticed my thinning lips more than I do and if you make your smile truly through and through -- all the ways to the eyes and heart -- nobody is going to care a whit.

 

However, if you frown with thin lips, you will look terribly grim and ghostly; there is no getting around that. Dogs might bite you just to be on the safe side! Barb's geese might scatter out of fear! So don't even try it!

 

Plus, as we age (with or without sclero) our lips begin naturally turning downward and thinning so we can look like we are mad when we simply have no expression. Thus it behooves us to always look on the bright side -- and remember to notify our face of it, lest we start family or community wars over our very unintended sour expressions. :blink:


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.

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Hi Amanda,

 

I'm 2-1/2 years post-diagnosis and I think my thin lips and purse string mouth got really noticeable to me about a year ago. My dentist noticed it right away, though, probably because he had to use a child-sized X-ray holder to get it in my mouth. When I grin widely, I've now got a very interesting set of crow's feet brackets on my cheeks, because my lips won't let the skin move upwards. I think they're kind of cute, sort of like a linear dimple!

 

My youngest is getting married this year and I've decided a hot-pink burka might be the thing to wear. It'll hide the lips, the teleangectasias, the remaining prednisone pudge, the O2 tank AND keep me warm in the A/C. Wait, I can't do that!! Both she and her intended always say "Hey, Pretty Lady" when they call. I can't let them down by not believing them! OK, it'll be pink lipstick and the skinniest looking outfit I can find! :lol:

 

Warm hugs and a big grin (see the linear dimples?),


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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I've always had thin lips, but now even more so. What is strange (to me) is that this time last year I was seeing the dentist and had trouble getting my mouth open wide enough. This year when I went for my cleaning I had no trouble at all. Another thing was when I start to chew, my jaw would hurt. That hasn't happened for a long time either. Could the facial exercises I do be helping that much?

 

And Shelley is right about frowning. It makes me feel and look like the "Wicked Witch of the West"! :lol: I'm normally a very smiley person.

 

Chris


Love makes the world go around!

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Aaaaahhh, Amanda, it'll NEVER get your SMILE!!!

 

Now, Janey...you just got me to thinking... What if we could "find a way" to move "it" from our fingers to our lips?! I'd go for that!

 

I've got the same thing going on as you, ladies. However, I'm sure all of you smile with your eyes and your heart... I'm just sayin' :rolleyes:

 

Mary in Philly, I have the vertical lines above my upper "used to be" lip, too! I'm not too fussy about them, either.

 

I have a cute story to share: When I was small, there was a friend of my family's who was so nice, yet she did something I never understood. She wore her lipstick, usually red-orange in color, far above her lips and all around! I always wondered "how" she put her lipstick on! (BTW, Shelley, her lips didn't need enhancing).

 

Jeannie, what is a burka? :huh:


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hello,

 

I have lip issues too. It's a bummer for sure. I really don't quite understand how this happens with scleroderma. Apparently it happens to those of us with sine scleroderma. I once had a date ask me if I smoked. I didn't end up marrying him. :lol: Lipstick looks ridiculous on me, but I wear it because it looks better than no lipstick.

 

I wish I had Julia Roberts' huge smile!!!!!!!

 

xo

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My daughter didn't know what a burkha is either and said "Sure, Mom, wear whatever you want" when we were talking about a mother-of-the-bride outfit. So, of course, her boyfriend had to ask. You'll never believe the dirty looks I got from her when I explained it is that head-to-toe thing worn by women in some cultures! :lol:

 

I still think it's a good idea! Just think of all the things I wouldn't have to worry about. Besides those already mentioned, add: bra straps showing, buttons/zippers giving way under the strain (I did mention pudge!), ladders in my stockings, putting on some make-up without sticking the mascara wand in my eye. . . The advantages are endless.

 

Big, warm hugs,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Lips disappearing fast here too and the vertical lines deepening by the day. I think it is the thing that bothers me the most at the moment-I can see my face changing almost daily. I'm with you on the Burkha Jeannie. In addition to all the benefits you list - a big plus would be not having to worry about having a bad hair day.

 

Lizzie

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I don't where I inherited my miniscule mouth and thin lips. My dad's smile reaches ear to ear and my mom's mouth is of a normal size. Going to the dentist wasn't a problem back in the day because the skin around my mouth would stretch like rubber. Now, I can't grab an apple and bite into it or munch on a corn on the cob soaked with butter. That doesn't mean I can't eat those foods. I just can't do it in the quick grab and carry way.

 

It's funny how I thought women who wore lipstick past their lipline were eccentric looking. Now, I can say move over ladies and make room for me. I'm in the line my lips outside the lipline club. Thank goodness I'm not missing the loss of full lips since I never had them. :)

 

 

Razz


Live well, Laugh often, Love much

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Hello All

 

Thanks for all the replies, I never knew it affected so many and it's amazing and very encouraging to know it can be overcome.

 

As I never had tight skin on my face I had hoped to avoid any changes but not so. Now I also have little red spots on my cheeks that aren't going away, are they that telnegy thingy?

 

Buy me a burkha! Make mine XL as now doubt my bottom will grow even bigger in the dark and warm, like some raging fungus or weird moss.

 

I'm finally in with the In crowd and I want OUT I tell you OUT! Wait a minute there's only one way out of this club, like the Mafia, and I ain't ready for that yet so I'm off to slap on anything I can find. Where's a paper bag when you need one?

 

Take care

 

Amanda


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Amanda,

 

Yes, the red spots are telangiectasias. The only way I can remember how to spell it is "Tel Angie" but I haven't figured out what I want to tell Angie about? One of these days I'll totally lose it and it will come out 'tell angie tazers'! :lol:

 

I've got them too. A lot of them look like little roundish clumps of red blood vessels, but I have a couple that are perfectly round and cherry red. In fact, two of them were the absolute first sign of scleroderma that I had. I thought I had a blood blister on my forefinger (not real good with a hammer here), but when the one on my bottom lip popped up, I wondered if there was something on the nail I had in my mouth when I hit my finger with the hammer!

 

Hugs!


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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I saw a doctor. today and she felt inside my mouth. She told me she could feel fibrosis in the tissue of my chin area. She could see it when she looked at me as my face kind of pulls on the sides of my chin when I smile and appears a little tight. This prompted her to put her gloved hand in my mouth and feel around. She said she is pretty sure this is from Scleroderma and she knew that wasn't what I wanted to hear. I think this has happened within the last year. I wish there was something I could do about it. It's quite stressful.

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I noticed the changes in my mouth when looking at the pictures taken this holiday. My family denies that it's different but I can definetly see the "sclero" mouth. I look like all teeth and my lips are disappearing. When I was in the ER about 2 months ago we had a visiting doctor that comes for the weekend in the ER and she knew by looking at my face that I had sclero. How is that for a "slap in the face". The one thing I've noticed though is that I don't have the wrinkles I used to have around my eyes. This disease puts botox to shame!

 

Warm hugs,

 

Peggy

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