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.