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Paula lesley

Just diagnosed with en coup de sabre

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Hi, I've just received a diagnosis 'en coup de sabre'. I'm 45 years old and noticed a lump forming on top of my head in January. This has progressed to a linear style loss of hair. The lump, can at times, feel like it should burst. The dermatologist conducted 2 biopsies which she felt were inconclusive and then sought the opinion of her colleague. The loss of hair is about 3 cm long and I can feel an unevenness on my scalp. I have prescribed a steroid cream and a review in 3 months. Just before holiday I was experiencing a strange moving sensation in my head which caused my vision to be 'wobbly' this went on for weeks, however, this seems to have stopped. Can anyone tell me what to expect and if they have this blister type lump?

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Hi Paula,

 

Welcome to these forums!

 

I'm sorry to hear that you've just been diagnosed with En Coup de Sabre and I've included the link to give you some more information about it. Thankfully, I've not experienced this myself, so can't give you any first hand advice; however, we do have quite a few members who may be able to help you.

 

I've also included a couple of links to other threads here and here and also a couple of our personal stories for Kathy H and Jane D which I hope you'll find interesting and informative.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello Paula

 

I wanted to say hello although I can't add anything about en coup de sabre as I don't have this diagnosis. It's quite rare, even in scleroderma, I hope you find reading others' stories helpful.

 

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)

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Hello Paula

 

My name is Amy, and as my username suggests, I have En coup de sabre. I've had it for 15 years now.  Our condition is very rare, but we are not alone. If you are still frequenting these forums, I will answer questions you have, the best I can.

 

Best wishes, Amy.

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Hello Amy

 

Welcome and thank you for coming in to share with Paula. Scleroderma is rare enough but En Coupe even more so. I wonder if you or Paula would have any photos we could add to our photo album? We could signpost people to them and many others would also find them as they struggle to find/accept/understand their diagnosis. No obligation though!

 

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)

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