How scleroderma has changed my face, despite my best efforts
The disease is taking my lips and nose like a thief in the night
The face is what people see first on someone, and something is happening to mine because of scleroderma. I’m not a vain person or someone who primps in front of the mirror all the time. However, some small changes are starting to appear on my face.
Scleroderma will snatch your looks like a thief in the night. I kept telling my sister and others that my face was hurting, though I struggled to describe the unusual pain. My nose hurt constantly, and my lips were starting to change in appearance. Before I got sick, I had voluptuous, thick lips and a great smile that showed off my beautiful white teeth.
I tried to connect with other scleroderma patients through social media and read blogs and comments about changes in their lips and noses. As I scrolled through fellow patients’ pages, I noticed that many didn’t share photos of themselves.
I contacted one woman who said that her lips were disappearing due to scleroderma and sent me before and after photos. Two others sent pictures showing the same vanishing lips. I panicked and began making phone calls to get lip augmentation. I hoped it would return the fullness of my lips.
Exploring my options
I had a consultation with a plastic surgeon and booked the procedure. Two days before it was scheduled to take place, the surgeon had to cancel. I was given the option to have the procedure done at the same time, but with a different doctor. Unfortunately, the other doctor had to decline because he wasn’t as familiar with my case. I was disappointed, to say the least, because I’d been looking forward to that day.
Later, while talking with my rheumatologist, I explained what had transpired with the plastic surgeon. He assured me he would connect me with one of the finest reconstructive plastic surgeons, and that I shouldn’t worry because that surgeon had helped many of my doctor’s scleroderma patients.
While I waited for my consultation, I continued to research lip augmentation. I learned about the difference between fat transfer (taking fat from another part of the body and injecting it into the lips) and lip fillers (injecting dermal fillers often containing hyaluronic acid), as well as the potential benefits and side effects of each. All the while, my facial and nose pain continued.
After my consultation with the new cosmetic surgeon, I felt ecstatic. He walked me through everything and we devised a plan. I decided to do the fat transfer procedure, with the fat being taken from my stomach, and hoped I might even go down a dress size as a result!
No pain, no gain?
On Sept. 11, 2022, the day of the procedure, my sister accompanied me to the appointment. To our surprise, she knew the doctor. I was excited that we were all connected.
All went well, though when I woke up my lips were swollen, making me look like a duck. Quack, quack.
My daughter and sister were alarmed by my appearance and how slowly I was moving after the procedure. I wasn’t allowed to eat anything but soft foods. My stomach area was a little sore, but no pain, no gain!
I was happy thinking the thief wouldn’t get my lips or nose. I could hold on to them just a little while longer.
Sadly, a few months later, my lips left anyway, and my nose is tapering even more now, too. My skin isn’t tight, though, as is common among many with scleroderma. I haven’t been given an explanation by a medical professional about what exactly is happening to me, but I’ll continue to seek answers. Meanwhile, many in our community look like twins with our thinning lips and tapering noses.
All things considered, I want to encourage other patients to advocate for themselves. Learn everything you can about any procedure you’re planning to have, whether it’s elective or medically necessary. Too many patients think that they work for the physician, and not the other way around. You can express your need for clarification, and you can say no. If at first you don’t succeed, try again.
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to scleroderma.
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Comments
Ma Fe Labastida
I have am suffering from this disease as well. I haven't fell anything like disappearing lips or nose. But, I do felt pain in my face sometimes. Mostly, it's pain in my joints specially fingers and knees. I also woke sometimes with puffy shiny face,puffy shiny hands and sometimes feet .From time to time, I suffer bloated stomach.
Patti Craig
I miss my lips and hate the lines surrounding my mouth. I hope someone can find a long term solution.
Sherlene Perkins
Me to the better for kissing.
Catherine
Just got a Dx also have reactive asthma but pulmonologist said it is not in my lungs. My hands, feet, face feel different and are changing.
Susan ashworth
Thanks for your post, I have just recently been diagnosed , I feel lost and confused , the disease has caused Pulmanry fibrocis , it has been creeping in to my life , I am usually very active live alone and am very independent , now I feel tierd all the time with no energy or strength ,
Sherlene
Keep fighting warrior I know the fatigue is real but when you get a burst of energy enjoy it.
Marta Farlin
You will have days or longer stretches of time like this, but it’s do important to not give up. I was diagnosed 34 years ago. Since then, it has gone to my lungs (about 25 years ago) and it has tired me out. My hair has thinned so much because my scalp is so tight, but I’m thinking I’m back in remission. Menopause caused the inflammation to flare up. I have trouble with my GI tract since the beginning, except now it affects my lower GI, so I get bloated and constipated. I’ve had it checked for GI paralysis, but no there… hopefully never. I’ll be 63 on May 2nd and look forward to another year of being alive. Prayers for you. It is very scary to hear you have scleroderma in the beginning. Chin up and never give up. Make sure you are having cbc and ana done every month or every other month, in the beginning to see how it’s doing and if it’s progressing. There are a lot of meds that can be taken and arrest this little booger of a disease.
Cindy
Anyone have the pain behind the eyes that is probably the eye disease that goes with my first autoimmune, thyroid. All please try the AIP Paleo diet. Hard to stay on but helps.
Kelda
Thank you for sharing your experience Sherlene. I can relate to the facial changes. I miss my beautiful full lips, too. 🙏🏿
sandra jayko
I to was diagnosed in 2020 at age of 48, my lips are very tight & face as well. Looks like i have had Botox . good luck
Mo godek
I read your article with great interest… I was diagnosed couple years ago with Scleroderma and am experiencing pain with my lips and the interior of my mouth. I’ve lost 40 pounds cause I can’t stand eating it’s so uncomfortable.. after numerous visits to assorted dentist and oral surgeon no luck. I look forward to reading any information you may have. Thank you and bless us all.🙏
Erica Simpson
Thank you for sharing this story and I have been saying it’s uncomfortable to eat and started seeing ENT again following the nurse told me other patients complain about dry sinuses and mouth 👄
Rhonda Barnett
I also have scleroderma. I am 60 years old... I was diagnosed 38 years ago. I have done the fat transfer 3 times... it turned out with the same results... it soon faded back into the same thin lips and nose. I now do fillers... they too do not last long... however, they make me feel better and to me, that's what it's all about.
Holly Cummings
Thank you, Sherlene, for sharing your experiences with us. I was diagnosed with CREST Scleroderma in 1994 -- now called Systemic Sclerosis (my specific diagnosis is called limited, cutaneous) -- at the age of twenty while studying in Australia for six months. I am grateful to have just celebrated my 50th birthday in December, but the one picture I allowed to be taken at my birthday celebration is really embarrassing and unattractive. My lips are gone, I've gained 25 pounds, had my upper teeth extracted, and it's NOT a good look. I feel as though I'm dealing with physical issues that a seventy year-old woman would be navigating: thinning hair, disappearing eyebrows, just generally looking and feeling washed out and pasty.
Last week, I popped $80 for an LED Lip Enhancer from Sharper Images. Each time I put the pacifier-type lips on my mouth and press the button, the LED red rays light up and do their trick for three minutes. The maximum recommended daily usage is 3 minutes per session, three times per day. I haven't been using the device long enough to see if my lips are "plumping" as promised by the printed material, but I'm desperate and I'm committed to incorporating this quick treatment into my day.
There seemed to be a number of items in the catalog that might benefit Scleroderma patients. I'm not trying to promote Sharper Images, but if you're desperate like me, look at their offerings either in a catalog or on their website and see if something looks like it's worth trying. I'm pretty sure you can get your money back. It would be interesting to find out if LED light therapy is finally a safe and effective option for Scleroderma patients to improve our appearances and the quality of our lives. It definitely is less painful than invasive surgery or other harsh and scary treatments.
Sherlene
Thank you for sharing I will certainly look into this And as for your eyebrows the henna treatment is awesome no pain and lasts about 10 days..
Marta Farlin
You look beautiful still. I was diagnosed at 29, ( I am 63 years old in May) when my only child was 5 months old. I noticed during the pregnancy that my forearms and thighs were feeling tight. My forearms got skinny from the pulling of the skin and my thighs had a banding across them on the inside of them like when your pantyhose are in a twist. It hurt to sit cross crossed… haven’t been able to since. The air hurt my skin. It felt like those invisible cacti thorns do. You can’t see them but they sting. My skin darkened, my nose lost its fleshiness and it became long and thin instead of long and a bit fleshy. I didn’t need to darken the sides of my nose to make it look narrow. It was, and I didn’t like it. One day I was putting on my makeup and noticed my top lip was thinner. At the same time I saw that under my lower lip, at the place where my chin used to dip, I had 10 deep vertical lines making it look like I smoked all 29-30 years. Then later my actual chin developed an arrow-like set of deep cracks that are purple inside from the scarring and depth of them. I wish I could have them filled in, but it’s too expensive anyway. As the year went on, I woke up and noticed that my left index finger had shortened by a whole phalange! It’s nubby on the end, never hurt/hurts and had not taken notice of it changing. We call it my ET finger. My scalp was/is hard so I lost some hair. All the hair on my arms and legs fell off too. As the tears went on, my Rheumatologist, who with my mother, saved my life, checked for EVERYTHING every other month from once a week when I started seeing him. They hated him in the lab because he required 14+ tests and sometimes tubes of blood. I once told them that I was very happy that he was extremely thorough because HE was the reason I was still alive. They never complained again. I’ve lived with it for nearly 34 years. It spread to my lungs, but I always ask my pulmonologist how I compare to a smoker (I’ve never smoke) and he tells me I’m great. Every year the run pulmonary function tests, and echocardiogram for pulmonary hypertension. I’ve been holding my own without medication for 33 years. I’ve accumulated several other autoimmune conditions, but by the grace of God and a great doctor and PENICILLIMINE ( an oral chemo) I’m living life a bit tired and depressed but enjoying my daughter, her husband and his family and my two lovely grandchildren.
I hope this gives you some perspective on scleroderma. Mine is now multi systemic sclerosis because it moved internally. Be very aware. One thing my doctor did tell me with my diagnosis… not to attend groups or look at pictures. I’d see the worst of the worst. He was right. I was 50 when I finally got the courage to look at pictures. It was sad. If I’d seen those at 29 with a 5 month old, I would’ve lost hope.
Marta Farlin
Hope you find relief for the pain you’re experiencing. Write me if you ever want. 🌷
Sherlene
You are absolutely right I do have to be selective in what I read and view. Sometimes the negative things that are said may not bounce off if me if I'm not having a warrior moment. Keep fighting..And thank you for reading my column.
Vicki Betts
Sherlene, Thank you so much for writing this article. I too have Scleroderma but am not experiencing any tightening of my skin. My mouth kept shrinking (which made dental work very painful because the dentist kept telling me to "open wide" but that was/is impossible. My lips have blotches in them and now I put on a light pink shade of Chapstick to hide it. I am glad it sounds like you have others with Scleroderma because I can't even locate a support group in my area. Again, thank you for sharing your personal experience with Scleroderma. Sincerely, Vicki Betts (Big Bear Lake, CA)
Sandra Korzer
I have two thumbs left on my hands .
My fingers got swollen and had lots of infection with them ,
My mouth has shrunk now and can only eat soft food , as I had all my teeth out due to shrinkage of mouth .
I also have lung fibrosis that doesn’t let me walk to far without getting out of breath !
I am sure everyone has something bad going on with there body .i wish you all a wonderful life while we are still here.
,
Tamara France
Is it possible to see before and after pictures? Do facial changes happen to everyone diagnosed with schleroderma? Thanks for the article.
Mary Ann White
Please, let us have a whole lot more information about the physical changes we may experience.
Steph
Hello, I was diagnosed with Scleroderma Sept. 2012 at the age of 28. I just turned 40 in 07/2024, and felt like I looked 60. My uncle passed away from complications due to scleroderma, so I was well aware of the disease and grew up knowing that was my sick uncle. He, was diagnosed at 20, and passed at 54 in 2018. I always noticed my uncle with a “certain look” towards him. The “scleroderma look” and I was determined to not let that happen to me. Well I tried. I was completely healthy my entire life. I took care of myself, I loved feeling and looking pretty. I started getting Botox bc my wrinkles were so deep on forehead, crows feet, and mouth, also I had mouth and lip shrinkage. The Botox doesn’t last as long as it does others, as well maintaining it is SO EXPENSIVE when everything goes back starting 1-2 months after procedure. I can’t afford it, and I hate the fact that I look different and don’t feel like my old self. It’s crazy how much slight changes, etc. affect your mental health. Not feeling of looking like myself due to other things going on with my body and I hate and there’s nothing I can do to change my appearance from changing… my hair I lost due to I think a bad side effect to an immunosuppressant drug I started (but later stopped due to my hair issues) and I had to pay out of pocket for my lower teeth bottom jaw. I had to have dental implants for all my lower bottom teeth. Now my top teeth are super loose and I’m trying to hang on bc I just can’t think I’m going to look even more different and I wish HEALTH INSURANCE COVERED COSTS OF ANY TYPE OF PROCEDURES, COSMEDICALLY, BECAUSE IT HELPS WITH MENTAL HEALTH. If I looked and felt pretty I would not be where I am today. Losing my hair, teeth, facial features, really, really affects me. It got me in a depression I pray will get better. I wish doctors would understand how hard it is for me anyway to go out in public. Maybe I’m too critical of myself, I feel like I’ve always been honest with myself, meaning if I looked ugly that day I wasn’t scared to say it, and other days if I know I looked cute then I felt confident inside. I’m not that person anymore. I wish we could get more help figuring out how to stop the progression of facial features with scleroderma.
Herika Scarlett Konrad
Hi Sherlene - how are you? I do know well what you go through it with your lips. The same happened to me. I get acid hyaluronic. It’s a battle. I even got a Medusa piercing to help the upper lips to stay out a bit.
If you ever want to talk - feel free to reach me
Herika Konrad
Heidi Reichelderfer
Thank you for the article. I was diagnosed with Scleroderma in 2015. I too have thin lips and have noticed a change in the appearance of my nose (among other things). I have been curious about that cosmetic procedure. It's a real drag attempting to drink out of a can, bottle, thick glass or mug (impossible). I have an upright light therapy unit that helps with my skin. A dermatologist prescribed the unit and I was elated that our health insurance covered the cost! The light therapy puffs my lips ever so slightly, but slightly is a win for us! Good luck and peace to all with Scleroderma.
Mildred Newson
Can you give me the name and number of your dermatologist? I would love to get the light.
Thank you
Demi Montgomery
This is an important topic. Many in our community are faced with this issue. Thank you for sharing your perspective and journey with the community!
Laura
This is incredible that I found this article.
I am scheduled for a consult with a plastic surgeon at the
end of April for this exact procedure. My insurance will not cover this as it's considered " cosmetic ". Therefore , this would be out of pocket. I'm slightly reluctant to begin with as I read your body re-absorbs the fat. This article had put a bit of perspective on this . I have a lot to think about. I'm grateful for this article
Vicki Baron
Thank you. I was diagnosed a year ago and already have no upper lip left. My whole face feels tight like I have on a facial mask. I see the change on my nose and above mouth. I have wrinkled horribly around my mouth and chin. I would love the option of a cosmetic treatment, but don't think it can happen.
Jo Shawyer
Hello Sherlene,
My face too has undergone changes with the most recent being disappearing lips. About 3 years ago, the first facial skin tightening appeared and it shrunk my mouth until I too lost my big smile. Dental treatment is difficult because my mouth is much smaller. When I smile the top lip pulls tight and prevents the smile from happening. Now the lips are disappearing too. Half of my top lip vanished last week. My smile looks more like a grimace and doesn't happen. A year ago skin tightening affected the right side of my face, so now I have wrinkles on the left side of my face but none on the right. I'm 78 now. I was diagnosed with Scleroderma in 2009 after Raynauds appeared on both hands I was advised to move to a hot climate which I did. ANA tests confirmed scleroderma that has steadily increased since then. I can no longer walk, so rely on wheels to move around inside or out. if I stand up straight I fall backwards and now I'm having gut issues as well. I stopped seeing the rheumatologist two years ago as he had no treatment to offer me that wasn't experimental drugs. I'm in Australia and will I'll check out your online community 'United for Scleroderma'.
Sherlene
Thank you so much for your insight I'm always interested in hearing stories of others with good news. 👍
Marta Farlin
Didn’t the doctor put you on any medication??? I was immediately put on PENICILLIMINE. It’s NOT ANTIBIOTIC. My doctor was aggressive with the treatment. It comes in pill form, or it did, back in 1990, the time of my diagnosis. He made sure I could handle the most of it. I got itchy and was taken off for a week or two. He then put me right back on. I list all of my tastebuds. He took me off of it for about another couple weeks and put me right back on. As this was happening , he was having me go in once a week for consultation and bloodwork. After a few months, my bloodwork showed I had high levels of protein in my blood and urine. Off the medication I went. He kept seeing me every week and urinalysis where I’d collect 24 hour urine samples to check protein levels, until there wasn’t anymore. From then on, it was declared an allergy to that medication. I have not been on any medication since that first year, and I pray (a lot) that I don’t have to again. It really put me into remission for a very long time. I do have lung involvement but have a pulmonologist who I see once a year for a pulmonary function test and Echocardiogram to check my heart and for pulmonary hypertension, which I have, but it’s low, and he keeps tabs on me. They use the old stuff like Methotrexate and Gold to help with Scleroderma too. I hope you find yourself another Rheumatologist. When my wonderful doctor retired, I went through three different rheumatologist. Most just were concerned with my joints. I finally found one who takes the entire body and checks for everything through the cbc and ana twice yearly. Please don’t give up. You are still young. 70 is the new 50 I hear. My body may feel old, but my brain thinks I’m 28. That keeps me going. Prayers for you. Please don’t give up, and demand answers. And, please keep looking through doctors until you find one who cares. There are a few out there still. Keep the faith.
Cindy
Please try the AIP paleo diet.At least give up tomatoes, peppers white potatoes and gluten. If this helps the full AIP paleo diet will really help.
Leslie Joines
Thank you so much for your article. My lips have almost disappeared too, and it makes me sad and depressed. They are always dry and hurt, so I'm constantly using lip balms to get relief. On top of everything else we have to deal with, I wish this wasn't one of them.
stella velazquez
Has anyone done fillers, botox and or PRP?
Liz Forsyth
I have recently begun working with the Steffens Foundation
www.Steffens-Scleroderma.org
You will not only get tons of information and answers, you will become a part of a rare family who understands what you are going through. Just remember that you can adapt even as your body changes, and that it's not the end of your life, it's the beginning of a new phase of your life. Contact me if you would like more info.
Tim
My teeth just started rotting away, soon have them all pulled and replaced but eight years ago I had them all. Other than that tight skin, easy to scar and high blood pressure. Some low platelets anemia and breathing trouble. Got to keep on daily and take the punches.
Anna Morrett
Hi guys: thank you for sharing life with scleroderma. It’s nice to be able to share with people who can understand these horrible circumstances. I started out at 23 just had my first child. They could nt get me to stop bleeding and on the third try of different meds I finally starting clotting. I was given blood as I had lost so much. After I healed from the delivery I started getting pain in my feet. It would come and go. I didn’t think much of it. Several years went by. I was playing softball and caught line drive hard in my mit. Several days later my finger turned blue and cold and started to hurt. Finger next to my picky. I went to the doc. He scheduled my for a few test, sent me to Chicago, no body knew what was going on. On one of the test showed my blood vessels were really tiny. I had injection in my neck to see if nerve block would help. Nothing worked. I finally was put on a blood vessel dilator. A year later I was diagnosed with a mixed collagen vascular disease. Then started getting sick with ulcerated colitis, couldn’t swallow issues, almost lost my index finger due to ulcerated sore. Hands and feet turning blue and painful. Colonoscopy test every two years to this day. Gastroparesis, throwing up and diarrhea. I have made it to 70. Managed to raise my daughter and worked full time for forty years. It is a terrible disease to which it was never labeled until I was in my 40’s as systemic scleroderma. I have been through several doctors now am presently going to Northwestern medical in Chicago as they are a research facility for scleroderma. I was expecting more than the answers of we are not sure. So they treat the issues or try too but can’t seem to find a cure for the havic it causes to your insides. Maybe someday . I pray for a time when there will be no more sickness and disease.
Kalye Obendorf
I was diagnosed exactly 9 days ago.... I am 34. I went in for my woman's yearly, and after 20+ years begging doctors to hear me, FINALLY 1 did. I have all 4 abnormal ANAs and the 1st draw my scleroderma levels were at a 12; then 24 hrs later they redraw to have a 2nd confirmation of diagnosis, my Scleroderma levels were down at a 7.
I live on the Idaho/Oregon border, and the rheumatologist can't get me in until November 30th.
I have no idea what to do with this diagnosis.
I appreciate you all pushing thru!