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Emma123

En coup de sabre.

80 posts in this topic

Hi Lena,

 

Welcome to these forums!

 

i'm sorry to hear that your daughter has been diagnosed with En Coup de Sabre and I do hope that you've found the information helpful in the links on this thread.

 

Please do keep posting and let us know how your daughter is faring.

 

Kind regards,

 

 


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

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International Scleroderma Network (ISN)

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Welcome everyone to the forums. This is a great place even at night when a person cannot sleep.

 

I have a dent in my head also so but it is not en coup de sabre. I have a head injury from work that has caused me to become disabled. The doctors think this is where my scleroderma came from as I had a fracture in my skull that went untreated but did heal on its own. I wear my bangs long so no one sees it.

 

Again welcome to the forums, this is a great place.

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I'm new to this blog and have enjoyed hearing other comments. I am 42 and have 4 children. I'm interested if anyone else had the experience of the en coup de sabre patches increasing during pregnancy. Mine did with each pregnancy, whereas it hadn't bothered me much for years. Mine started when I was 19. Thank you! Also wondering what treatments have worked to regress disease, and if tissue ever went back to normal, without surgery. Any suggestions for doctors around Seattle and Portland are appreciated.

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Hi Countyrygirlj,

 

Welcome to these forums!

 

I'm sorry to hear that you suffer with en coup de sabre and I've included a link to our medical page on treatments for this condition of which UVA1 phototherapy is now the recommended first-line treatment. We also have another thread on en coup de sabre and a great video on linear scleroderma which I hope you'll find helpful and interesting.

 

We do recommend that our members, if possible, consult a scleroderma expert as this complex disease does require specialist knowledge and expertise.

 

I'm afraid I can't advise you about the changes to en coup during pregnancy from my own experience; however, it's possible that we may have other members who can give you more first hand information about this.

 

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)

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I am new to this Forum. I have En Coup De Sabre also. Started in childhood. The doctors my parents took me to did not know what it was. I was 22 when I went to a dermatologist and got the diagnosis. In addition, I have developed other auto immune conditions.
I am currently researching the cause of scleroderma. In particular the link with environmental toxins. If any of you have information on this and willing to share it, this would be greatly appreciated. Thank you so much. I am so happy to find this Forum!!

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