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Found 8 results

  1. 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 post´╗┐ed in the ISN Newsroom. ´╗┐Please check the newsroom daily for updates on scleroderma and other related articles.
  2. 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.
  3. 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.
  4. 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.
  5. Hello - I'm new to the group. My daughter (9) was just diagnosed by her dermatologist with plague-type morphea. She has a 2x4 in dark patch on her forehead with an indentation that runs up into her hairline. After doing some research, it appears to be "en coup de sabre". She is going to see a specialist on August 27, but I am desperate to learn more about what type of testing she may go through as well as potential treatments and outcomes. Any information/advice would be greatly appreciated. ~jena
  6. 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 :)
  7. Hi everyone. Firstly I'd like to say how truly nice it is to "meet" others just like me. Until last week, I thought I may even be the only living person with en coup de sabre. So thank you all for gathering here. Secondly, I'll give a brief overview of me; My name is Amy. I am 29 years old, mother of two (a 7 year old and 4 year old, both of which are perfectly healthy specimens) woman from Australia. I had zero symptoms of scleroderma en coup de sabre until I turned 15. At that point a blue line appeared on my forehead that quickly changed to brown and the inch of hair above it fell out. Over a short period of time, the line indented. My line stayed relatively stable until my first pregnancy, in which it doubled in size. Then in my second pregnancy it doubled in size again. I was misdiagnosed several times, being told it was an abrasion under the skin, a pigment change same as age spots, a linear nigra (like pregnant bellies get) and perhaps a form of eczema. Last year I was referred to a skin specialist to try to get my hair to grow back. Imagine my shock when she took one look at me and said that I have scleroderma en coup de sabre..... I was expecting her to look just at my bald spot, maybe prescribe a cream..... but instead she gave me the answer that no one else had been able to give me! It has been nearly 5 years since my line has grown, I'm hoping it's burnt itself out. It extends from within my hairline, to half way down my nose. Last month I had my first MRI and dye contrast to see if my skull has been badly involved, fingers crossed, it's just fat and tissue, but I won't find out until May. It's hard to say what symptoms I have, because I don't fully understand what is connected to my condition, and what is just plain old me. I do suffer anxiety, icy cold hands and feet and when I'm trying to warm up, I need heat from another source. Giving me a pair of socks will not heat my feet, but a hot water bottle will etc. If I get a scratch or pimple etc, my skin scars brown where they were and takes a good year to fade. I get thick skin across my big toes, which feel tight and splitty if I don't exfoliate the skin down. I have dark patches of brown skin on both of my knees. Sometimes the top of my hands do this thing, where it feels like a rubber band gets pulled tight and released in a 'twang' motion. Oh, in other news, I'm donating blood today. I contacted the Red Cross Unit and had them ask their medical leader if the scleroderma I have makes me ineligible to donate, but because my organs aren't affected, they still want my blood. Anyhow, pleased to meet you all. Hopefully I can connect with some other en coup sufferers. I connected with my very first fellow en coup de sabre friend this past week. Both pinning the same photo of a woman with a matching head scar to ours. Suddenly, this world doesn't seem so big, and that's a pretty good feeling. :) Best wishes, Amy.
  8. Hi, I was diagnosed with en coup de sabre in February 2012 after I found a dent on the right hand side of my forehead one evening. A few days later I noticed quite a lot of hair loss so went to my doctor, who was bamboozled by this, and sent me to a dermatologist. A couple of weeks later, after an MRI scan, blood tests and biopsy, they told me I had en coup de sabre. I am currently on Mycophenalate (Cellcept) for this and see my consultant every 6 weeks to check the progression of this disease. My consultant was trying to find some one else in the UK with the same condition but as yet as failed to do so. As I was only diagnosed a few months ago I do not know a lot about this and would love to talk to some one with the same condition as it is very lonely and a bit scary when you don't really know what is going to happen in the future with this. Any advise would be gratefully received. I am female, 33, and live in not so sunny Wiltshire!
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