Jump to content

Welcome to Sclero Forums!! How may we help you?


En coup de sabre

en coup de sabre

  • Please log in to reply
4 replies to this topic

#1 katchan



  • Members
  • Pip
  • 8 posts
  • Location:Wiltshire, UK

Posted 24 August 2012 - 04:58 AM


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!

#2 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,274 posts
  • Location:Minnesota

Posted 24 August 2012 - 11:42 AM

Hi Katchan,

Welcome to Sclero Forums! I'm sorry you have en coup de sabre, but I am very glad that you've found us. The most important thing for en coup (or any type of scleroderma for that matter) is to find good medical advice...and follow it. It sounds like you are already in good care, just from having managed to get a diagnosis, which alone is half the battle!

Here are some warm, welcoming hugs, just for you.

Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

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

Posted 24 August 2012 - 01:46 PM

Hello Katchan

Welcome to the forums and you'll be glad to know there are mayn resources here in the UK for you! May I suggest that you stick to this website or the Scleroderma Society website for your information as it's accurate and the people are genuine.

The Scleroderma Society has details of scleroderma experts here in the UK should you or your medical team want it. They also run local groups around the country for people with scleroderma and you do not have to be a member to attend and if there isn't one in your area you can go to another one, there are no boundary restrictions. I can't gaurantee they'll be someone else with en coup de sabre at any of the meetings but there will be many people with scleroderma and what ever type of scleroderma we have we face many of the same issues. For example, will my appearance change, will my mobility be affected, will I be able to work and so forth.

I look forward to hearing more from you 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)

#4 judyt


    Gold Member

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

Posted 24 August 2012 - 02:48 PM

Hi Katchan,
If you look further on the main page of this site you will find a personal story from somebody in Berkshire who has been diagnosed with En Coup de Sabre. Perhaps you have already looked at it, but it is confirmation that rare as it is there will be somebody somewhere who knows what you are dealing with.

Best wishes,

#5 Joelf


    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,846 posts
  • Location:West Sussex

Posted 25 August 2012 - 12:36 AM

Hi Katchan,

Welcome to these forums!

I'm sorry to hear that you've been diagnosed with En Coup de Sabre. Amanda has given you some useful links for more information about this bizarre condition and I've included a link to the very helpful and interesting thread on En Coup de Sabre that Judy mentioned.

I do hope that having found our forums and joined our community you will now feel less isolated and please do keep posting and let us know how you're faring.

Here's another :emoticons-group-hug: to keep company with the one Shelley's given you.......I'm the red one!

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)

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