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En coup de sabre.


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#61 katchan

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Posted 24 June 2013 - 12:39 AM

Hi,

I am after some advice as I am not seeing my consultant for a few weeks.

 

I have en coup on the right hand side of my forehead but in the last few days have noticed that I now have a dent inside my dent and my right eye is painful, feels like I have been punched.

 

I have been off the mycophenolate for about a month now as my consultant said that was the only way they could see if it was working.

 

Feeling a bit scared of what is happening, any advice greatly accepted.(have only had en coup for 17 months and came on very quickly).

 

Kate



#62 Joelf

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Posted 24 June 2013 - 11:15 AM

Hi Kate,

 

I'm sorry to hear that there seems to be a further problem with your en coup de sabre.

 

I'm afraid I can't really advise you on your new symptoms, as I have no medical training, apart from a now out of date first aid certificate and no personal experience of en coup de sabre, but I would hazard a guess that perhaps discontinuing the mycophenolate has accelerated the symptoms?

 

I hope you don't have to wait too long to see your consultant, who hopefully will be able to advise you further.

 

Kind regards,


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#63 katchan

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Posted 25 June 2013 - 08:54 AM

Hi,

I am seeing my consultant next week!

 

Do you know of any trials, etc., concerning en coup de sabre? Or anything else such as experts, as my consultant has been trying to find out with no luck as yet.

 

Kate



#64 Shelley Ensz

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Posted 25 June 2013 - 10:39 AM

Hi Kate,

 

It's my understanding that UVA1 Phototherapy is now one of the first-line therapies for en coup de sabre, as well as for other forms of localized scleroderma such as morphea and linear.


Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

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

#65 Deeny56

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Posted 09 July 2014 - 04:25 AM

Hi Emma,

 

My name is Dee and live in Birmingham England. I have a daughter who is nearly 40 years old who was diagnosed with En Coupe de Sabre in 1978. I first noticed a small loss of hair when she was 2 years old which progressed to a bigger patch and a indent in the skull which goes from the top back of her head to the front of her head going through her forehead eye and nose; she had been very good at disguising it and covering it with her hair.

 

At that time I was unable to find out much about En coupe de Sabre in those days as little was heard of it and the only Specialist Doctor who knew anything about this shot himself a few weeks before they were due to operate on our daughter. She has since grown into a young lady and has children and a grandchild of her own all doing fine and touch wood without the same.



#66 Shelley Ensz

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Posted 09 July 2014 - 08:57 AM

Hi Dee,

 

Welcome to Sclero Forums.  I'm sorry your daughter has en coup de sabre, but I am delighted that you reached out to provide assurance to Emma about it.  How sad about the doctor.  And congratulations on being a great-grandma!

 

Anyway, it's a joy to have you here and thank you for participating and offering support to others. We all appreciate it.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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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.

#67 Joelf

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Posted 09 July 2014 - 09:03 AM

Hi Dee,

 

Welcome to these forums!

 

I'm very pleased to hear that your daughter's children and grandchildren do not suffer from En Coup De Sabre and thanks so much for posting the encouraging advice for our members who do have it and are concerned about any future children being affected by this disease.

 

Kind regards,


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#68 Amanda Thorpe

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Posted 10 July 2014 - 12:45 AM

Hello Dee

 

Welcome and well done! You daughter's coped so well with a difficult disease because of your influence and to say thank you she's made you a grand ma and ultimately a great grandma!

 

I'm a great aunt but "just" a grandma and, oh my, aren't they peculiar little critters! How can something with so small legs move so quickly? How can the owner of such a face have done that...no, that's right... nothing done...good as gold!

 

Take care.


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#69 Amanda Thorpe

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Posted 10 July 2014 - 12:54 AM

Hello Kate

 

Mycophenolate takes around 3 months before it starts to work so I have no idea what your consultant is doing but I don't see how it can work...

 

It might be an idea to read up on mycophenolate and discuss it with the doctor...

 

However, Shelley's quite right UVA1 phototherapy is now the first line treatment for localised scleroderma of which en coupe is one type. Mycophenolate is usually used for systemic scleroderma.

 

You might want to find a consultant more familiar with scleroderma...

 

Take care.


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#70 Jenny Amie

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Posted 10 January 2015 - 01:02 AM

Hi, I'm mum to a 12 year old who has En Coup De Sabre which runs down her forehead to eye brow. This is all very scarey for me, as we are still waiting to see a specialist (we are in NZ.)

 

I've been reading through a lot of posts and see many people have had it since a child and it hasn't caused problems; is this normal? It says it's a rare thing? How rare? Sorry I'm very new to this and worry what the future holds for my daughter :(



#71 Joelf

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Posted 10 January 2015 - 05:07 AM

Hi Jenny,

 

Welcome to these forums!

 

I'm very sorry to hear that your daughter has been diagnosed with En Coup De Sabre; it must be very worrying for you and I've included a link to our medical page to give you some more information.

 

One of our Support Specialists, Judyt, is in NZ and I expect she will be able to give you some more advice about Scleroderma specialists in your country; we do recommend that our members, if possible, consult an expert, as this complex disease does require specialist knowledge and expertise.

 

To give you some more help I've included a couple of our previous threads on the subject.

 

Kind regards,


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#72 judyt

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Posted 10 January 2015 - 12:29 PM

Hi Jenny,

 

Welcome to the forums, but I am very sorry it is because of your daughter's En Coup de Sabre.   I have a 12 year old granddaughter and am very aware,again, how self-conscious they are at that age.

 

I see you are here in New Zealand and I wonder where exactly, and who you are waiting to see.   It is not easy for us here but there are support groups and some Doctors who know more than others.

 

If you would like to you can send me a Private Message and we can talk about specifics.   To send me a message just double click on my name at the top of this post and a box will pop up.

 

In the meantime here are some hugs for your wee girl :emoticon-hug: :emoticon-hug: :emoticon-hug: and tell her that we send her lots of love.

 

Judyt



#73 Amanda Thorpe

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Posted 14 January 2015 - 02:41 AM

Hello Jenny
 
Welcome and I am sorry your daughter has en coup de sabre. You are in the right place for the best information and support for any type of scleroderma.
 
Any type of disease is hard to bear especially if it affects your child, the good news is that en coup de sabre is a type of localized scleroderma and therefore does not affect the internal organs or life expectancy. That said it can sometimes cause other symptoms, a 2003 large multinational study found that 25% of people with localized scleroderma had at least one other non cutaneous (non skin) symptoms, such as osteoarticular (affecting bones and joints), neurological (epilepsy, headache, peripheral neuropathy), vascular, gastrointestinal (heartburn), respiratory, cardiac, or renal. Less than 4% of those with morphea had more than two non cutaneous symptoms and none of the people in the study developed systemic scleroderma during follow up.

 

Take care and keep posting.


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#74 Shelley Ensz

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Posted 15 January 2015 - 10:29 AM

Hi Jenny,

 

Welcome to Sclero Forums!  I'm sorry your daugher has en coup but I'm very glad that you found us, and I hope we can be a continuing source of information and support for you. Jo, Judy and Amanda have given you some great resources. Please keep in touch with regular updates and questions, we always appreciate that, and look forward to getting to know you better.

 

:emoticons-group-hug:


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.

#75 LenaL

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Posted 04 June 2015 - 08:22 AM

Hi Jenny,

I'm a mother of an eight year old daughter who was diagnosed with En Coup de Sabre in August 2014, and I really understand your worries about getting information. We live in Sweden and haven't heard about any one else with the same diagnosis.

 

Elsa has a big bald spot at her scalp and the sclero is running down to her left eye. She is having Methotrexate once a week and hopefully that will stop it from going any longer.



#76 Joelf

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Posted 04 June 2015 - 09:26 AM

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,

 

 


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#77 quiltfairy

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Posted 04 June 2015 - 03:07 PM

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.

#78 countrygirlj

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Posted 30 October 2015 - 09:57 AM

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.

#79 Joelf

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Posted 30 October 2015 - 11:28 AM

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
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#80 Doris Rumore

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Posted 02 February 2016 - 05:24 AM

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!!