Jump to content

Hang onto your hat: Sclero Forums Upgrade May 14-21, 2017!! The Forums will be offline for up to 4 days, and then will return with an entirely new look and feel.


Scleroderma En Coup De Sabre

En coup de sabre

  • This topic is locked This topic is locked
4 replies to this topic

#1 IHaveEnCoupDeSabre



  • Members
  • Pip
  • 2 posts
  • Location:Australia

Posted 17 February 2014 - 04:47 PM

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.

#2 judyt


    Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPip
  • 653 posts
  • Location:Auckland, New Zealand

Posted 18 February 2014 - 12:49 AM

Hi Amy,

Welcome from another downunder member.   I have Systemic Sclerosis so know nothing about En Coup apart from what I have learned here.   However, there are good and lively support groups both on-line and face-to-face so I hope you will be able to make some connections wherever you live in Australia.


In the meantime, and for the future too, you will find excellent information here as well as kindly support.


Best wishes


#3 Joelf


    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,906 posts
  • Location:West Sussex

Posted 18 February 2014 - 12:09 PM

Hi Amy,


Welcome to these forums!


I'm sorry to hear that you've been diagnosed with En Coup De Sabre and you will find that we have quite a few other members who suffer with the same affliction.


As the form of Scleroderma from which you suffer is localised and not systemic, this is probably why you are accepted to donate blood, as anyone with any autoimmune disease should not give blood, unless they are asymptomatic and off all medications for one month.


I do hope that the results of your MRI scan are favourable and that the condition has stablised. UVA1 phototherapy is now the recommended first-line treatment and I've included a link to our medical page to give you some more information.


KInd regards,

Jo Frowde
ISN Assistant Webmaster
SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager
ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#4 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,624 posts
  • Location:(United States)

Posted 19 February 2014 - 11:56 AM

Hi Amy! It is truly very nice to meet you! 


I am REALLY glad you have come to this forum, where folks are wonderful and VERY supportive, I've found! Perusing the information under medical, (as well as the great links Jo provided you) may help you better know more about your illness.


Like Judy t, I'm unable to speak to you, (first-hand) about your illness, but I am hopeful you will gain much insight before long.


It really IS great, knowing you are not alone, having others to relate to/with.


(What a beautiful photo of you and your daughter, by the way)!


Please keep us posted as to how you are doing and should you have any queries, please pop in anytime, as we'd love to hear from you! 


In the meantime, I am sending you and your family virtual hugs :emoticon-hug:  :emoticon-hug:  :emoticon-hug:

Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#5 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,925 posts
  • Location:U.K.

Posted 20 February 2014 - 02:59 AM

Hello Amy


Welcome to the forums and I am glad you've been able to make contact with another person with en coup de sabre. There's nothing like making contact with someone who knows what it's like to be you! When first diagnosed I was desperate to clap eyes on another person with systemic scleroderma having felt so isolated after I was labeled "rare", good for steak not so much for people!


I said on the UK forum that you might consider adding a photo of your en coupe de sabre to our photo gallery, there is of course no obligation for you to do so but it may help someone else searching for or having just been diagnosed.


Please keep posting and take care.

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)

Also tagged with one or more of these keywords: En coup de sabre