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Found 186 results

  1. En coup de sabre is springing to mind when you all talk about dents in your foreheads. It may be worth at least giving some consideration to this. I would say that it seems unlikely that such dents are stress related and prescribing diazipam for them is flabbergasting.
  2. Fat Grafting for the Treatment of Scleroderma. Fat grafting in scleroderma patients likely improves skin manifestations by recreating fullness, correcting contour deformities, and improving skin quality. PubMed, Plast Reconstr Surg, 2019 Dec;144(6):1498-1507. (Also see En Coup de Sabre) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  3. Hi everybody, I've read this forum for very long time. I'm from Chile and I've got scleroderma ( en coup de Sabre ). During some years ago I saw in my forehead ( precisely 5 years ago ) a lesion and now it's become much worse. I went a dermatologist and I didn't know anything about it. I'm very depressed and try not to think about it, but it is very complicated. In my life I've only known 2 people with the same disease. I'll show us some photos of my lesions. Photo 1 Photo 2 Photo 3
  4. Linear scleroderma "en coup de sabre" with extensive brain involvement-Clinicopathologic correlations and response to anti-Interleukin-6 therapy. The interleukin-6 (IL-6) receptor inhibitor tocilizumab was used and the patient improved dramatically, likely reflecting the drug's effect on the replenishment of endothelial progenitor cells. PubMed, Orphanet J Rare Dis, 2019 May 16;14(1):110. (Also see En Coup de Sabre) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  5. Localised scleroderma en coup de sabre affecting the skin, dentition and bone tissue within craniofacial neural crest fields. SCS conditions seem to extend from the skin in the depth to the sella turcica area within neural crest fields. PubMed, Eur Arch Paediatr Dent, 03/07/2019. (Also see En Coup de Sabre) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  6. Hello and thanks for reading this, My name is Ben and I have recently noticed a small indent running vertically from hairline down to the medial side of my left eyebrow. The indent moves with the skin. Is this characteristic of ECDS? It is very subtle, so subtle that I cannot tell if it is just part of my normal anatomy. When I examine my forehead, I can feel other groove like structures, but my familiarity with ECDS frightened me enough to present this to the community. Does ECDS create indentation of the bone or of the skin? How quickly does the groove typically grow? Thanks for the help.
  7. Hi, thanks for taking the time to read. I have developed a vertical indent on my forehead that I first noticed about a month ago. It has quickly become more prominent and I'm not really sure what to make of it. It stretches from the center of my forehead at my hairline to the corner of my right eyebrow. If I run my finger over any part of the line I can feel what seems to be an indentation in the bone. Does anyone know if this is congruent with initial stages of ECDS, or if not, what else it may be? Here is a picture: https://www.sclero.org/forums/gallery/image/1172-20181217_194838jpg/
  8. Hi Lepanto, Welcome to these forums! I'm sorry that you're suffering with en coup de sabre and are feeling depressed about it. There are a few treatments available, including UVA1 treatment and I've found another thread En Coupe De Sabre, which may be of interest to you and which you may find helpful. Kind regards,
  9. Hello, I believe I have the Coup de Sabre linear scleroderma. It started when I was about 8/9 (22 now) my eyebrow had some hair disappear (really scary) and I noticed my skin dent in and over the years it moved in an upward line. Now it’s almost to the top of my head. When I went to the doctor he had prescribed me some pills; I would take one every 3 days, I did that for 2 years or so and I never went back didn’t really know what was going on. My parents didn’t know much English so that didn’t help. A couple years ago I got microblading because I got insecure about my eyebrows. Loved it ! But I’m really scared cause I’m missing all that hair on my head. Can it grow back? I’ve made an appointment but it’s not gonna be for awhile.
  10. Ophthalmic findings in linear scleroderma manifesting as facial en coup de sabre. In addition to the established feature of enophthalmos, the oculometric evidence suggested smaller eye and rectus muscle involvement, interpreted as a secondary negative trophic effect of the overlying skin disorder on eye structures. PubMed, Eye (Lond), 07/04/2018. (Also see En Coup de Sabre) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  11. We are only 24hrs into this diagnosis and I am trying to wrap my head around what it means for her. I want her to see pediatric linear scleroderma expert. So many centers are for adults only. Is there a US Dr. who is considered to be a top expert in Peds? Thanks so much!!!
  12. Progressive Hemifacial Atrophy and Linear Scleroderma En Coup de Sabre: A Spectrum of the Same Disease? There are certain differences in neurological and ophthalmological changes in the diseases. PubMed, Front Med (Lausanne), 2018 Jan 31;4:258. (Also see En Coup de Sabre) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  13. Hi Ben, Welcome to these forums! I'm sorry to hear that you're feeling concerned that you may be developing en coup de sabre (ECDS). En Coup de Sabre is a term used when linear scleroderma affects the forehead. It appears as an indented, vertical, colourless, line of skin on the forehead. Of course it is possible that the indent you describe is the beginning of ECDS, but the best person to advise you is your primary doctor, with a view to a referral to a listed scleroderma expert/dermatologist, should this prove to be the case. We do have some useful images in our Photo Gallery, kindly posted by one of our members, Ranchosteve, which may be of help to you, but the bottom line is that you should really obtain expert advice about this worrying symptom from a medical professional. We also have another thread on En Coup De Sabre, which I hope you'll find interesting. Kind regards,
  14. Hi Blair, Welcome to these forums! I'm sorry to hear that your daughter has been diagnosed with en coup de sabre and send my best wishes to you. Regarding silicone breast implants, contradictory findings continue to plague research into this area. I've included a link to our medical page Causes of Scleroderma: Artificial Joints and Silicone Breast Implants, which may be helpful to you. Kind regards,
  15. My name is Blair. In June of 2018 my daughter, who was seven years old at the time, was diagnosed with En coup de Sabre and has been on treatment since. Upon doing my own research, I have found that there is a possible link between silicone breast implants and auto immune diseases such as Scleroderma. I am wondering now because I have silicone breast implants and breast fed my daughter when she was a baby if there is any sort of connection between the two. Just reaching out to see if anyone else has this situation.
  16. I have been told this is one of the rarest forms of scleroderma. I have never met anyone other than myself with this type. I also have numerous other types of auto immune conditions. Any info would be appreciated. Thank you.
  17. Hi Chris, Welcome to these forums! I'm sorry to hear that you've had a worrying symptom, which is concerning you. It's possible that it could be the beginnings of en coupe de sabre; however, as I have no medical training, I'm not able to verify whether this is indeed the case, or not. It could also relate to any number of health conditions and so I would therefore suggest that you should make an appointment with your doctor to ask his advice about it and take things from there. He would be the best person to decide if it warrants further investigation from a specialist and should it subsequently turn out to be ECDS, then you may need a referral to a listed scleroderma expert. I've found another thread En Coupe De Sabre, which may be of interest to you. Kind regards,
  18. Hi, I stumbled across this site and I think it’s great! Loads of info and support!! I’ve had a dent in my forehead for as long as I can remember. I’ve always had a lot of hair and a fringe to hide my forehead, so no one is 100% sure how and when it first appeared. My mum recons it started when I was about 4, which is when she took me to see a doctor to have the full-grown dent looked at. The general practitioner said I’d probably bumpt into something playing around... And that was it!! Since then a few years have passed (I’m 29 now) including teenage years when I hated not being as pretty as other girls. Whenever I was asked about my dent, I’d get very cross and go off sulking, but really I was devastated. While reading up a different medical topic (I’m a vet) I looked at some human skin conditions and stumbled across a photo of a person who looked just like me! I went to a dermatologist who didn’t think anything of it and sent me back home. This was about 4years ago. But I couldn’t let the idea go, that I might have en coup de sabre, so 6months ago I showed the photo to a friend of mine (a general practitioner) and asked her about it. She didn’t realise I had a condition very similar to the woman on the photo, because luckily I still have loads of hair hiding my dent (all the way down to my left eyebrow) and my bold spot. She hadn’t ever heard of en coup de sabre, so we did our research together… After that she had my bloods checked (ANA etc.), CT of my cranium and an MRT done, to make sure I didn’t have any underlying brain issues. She managed to arrange all this within 2weeks (great having my general practitioner as a friend!!)! After all of these tests she sent me off to a specialist to confirm what we had diagnosed before. And yes, it is en coup de sabre. I’m so glad I’ve finally got a diagnosis! I do wonder though how many people are out there not diagnosed properly. My condition has not got worse since I was young and I am healthy otherwise. Which brings me to my question: Me and my partner are thinking of having kids one day and I haven’t got a clue what to look out for during pregnancy, also I can’t find anything in the literature stating my kids could get the same illness (or maybe a worse form…). Can you help me? Perhaps you’ve had en coup de sabre all your life and you’ve had children without them being affected? I’d love to hear from you!
  19. Hi LolaP, Welcome to these forums! I'm sorry that you have worries about linear scleroderma and specifically en coup de sabre. From reading your post, it appears that you haven't received much in the way of effective treatment; we do recommend that our members consult a listed scleroderma expert, as such a complex disease requires specialist knowledge and treatment. I've included a link to our medical page on Treatments for En Coup de Sabre, which includes UVA1 phototherapy as well as other treatments. I've found another thread on En Coup de Sabre, which I hope you'll find interesting and informative. Kind regards,
  20. Hi Vuhoangdc, Welcome to these forums! I'm sorry to hear that your daughter has been diagnosed with juvenile scleroderma and I can understand how worried and concerned you must be feeling. The most important thing to know about juvenile scleroderma is that it is a form of arthritis, and it is important to consult a juvenile scleroderma expert. I've included a link to listed scleroderma experts, (some of which specialise in juvenile scleroderma) however, we do not have anyone in Vietnam (if you are resident there). In that case I would advise you to try and get an appointment with the very best rheumatologist you can, in order that your little girl can receive the treatment she needs. As Dimarzio has suggested, it would make it easier to try and advise you if we had a little more information from you. Over 90% of cases of juvenile scleroderma are localized, such as morphea, linear or en coup de sabre. These types affect only the skin, and not the internal organs, so it may be that your daughter is suffering from that type. We do have other members with children who've been affected and I've found a couple of threads about juvenile scleroderma: No symptoms ANA and ACA positive Concerned about my daughter (5years old), which I hope you'll find helpful and informative. Please do keep posting and let us know how your daughter is progressing. Kind regards,
  21. Hello everybody I want to share my story. I have lived with Coup de Sabre since I was 13 years old. It has affected my life to the day, making me very self conscious with my appearance through out my life. I am currently getting consults with plastic surgeons over getting fat graphs. I will update this post with pictures and progress, if you have any questions, feel free to ask.
  22. Hello people of Sclero Forums, I'd first like to start off by saying I am so grateful to have found this site and to hear there are others out there, it's always comforting to know you're not the only one out there. I am currently a 21 year old female in my third year of university and was 'diagnosed' with morphea mid last year (2013). The symptoms first started in 2012 in my first year at university, I noticed a tiny bald spot in the front area of my scalp near my forehead. I thought nothing of it until couple of months later I was combing my hair back and I realised there was a large 2cm bald spot. This frightened me so I went to doctors who told me it looked like a fungal infection and gave me ointment to rub on it every night. Before I knew it it had grew a lot bigger and resulted in my scalp feeling like it was indented in. The skin colour in the affected area was brown and discoloured and there were occasional tingling sensations to it, the hair in the surrounding area also came out very brittle and fell out very easily! :( Luckily the area affected is able to be covered by my fringe however it affects my every day life, I can no longer tie my hair up with my fringe down, must always be pinned up or the end part of my bald spot sticks out and on windy days it's a nightmare trying to hold my hair down! I've also noticed the same indented discolouration around 1cm long on my upper forehead and a similar patch just above my eyebrow. In 2013 I was able to see a dermatologist who said it looked like morphea and there was nothing there was worth doing because it looked like it had fizzled out. I'm just terrified that it will get any bigger or what if it affects my face? Is anybody out there who went through a similar situation to myself where it just stopped? The dermatologist also said I would be able to in the future, get it surgically removed and have my surrounding skin tissue stitched together.. ? I want to upload a photo to show you what it's like but I don't know how... When I google what I have it seems to show the worst case scenario and it is getting me very paranoid. It hasn't seem to grown since last year... I live in New Zealand and the dermatologist I saw wasn't very reassuring, does anybody have any advice or possible treatments I could look in to? Thank you!
  23. So my life has been hectic, we moved across the country 6 months ago and are trying to adjust to the new place. I think my indentation line on my forehead started before we moved, it was barely apparent. I think it is becoming more apparent and I tried to take the best picture I could. It comes across from my hairline to the start of my right eyebrow. You can really only see it at a certain angle and in certain light. I have no other symptoms other than my right eye aches sometimes but not too bad. I am going to make a doctor appointment for my physical exam and bring it up then. Is it likely he won't know what En Coup De Sabre is? Will I most likely be referred to a Dermatologist? Also, I am almost 33 years old and female, never shown any signs of this before sometime a few months ago and even then I thought the indent was weird but not alarming...until I googled it. Is there any chance it could be something else? Aging? I seem to worry a lot anyway so my husband thinks this is no big deal. I thought I would come here while I wait to see the doctor. If anyone has any advice for me I would appreciate it :)
  24. Hi Adriana, Welcome to these forums! I'm very sorry to hear that your young son has been diagnosed with en coup de sabre and send my best wishes to you. I've included a link to our medical page on Treatments for En Coup de Sabre, which includes UVA1 phototherapy as well as other treatments. I've also found a recent news item about the use of Methotrexate and glucocorticoids, Comparing ultraviolet light A photo(chemo)therapy with Methotrexate (MTX) protocol in childhood localized scleroderma: Evidence from systematic review and meta–analysis approach which I'm hoping you'll find helpful and informative. Kind regards,
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