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Emma123

En coup de sabre.

80 posts in this topic

Hi,

 

I stumbled across this site and I think it’s great! Loads of info and support!!

 

I’ve had a dent in my forehead for as long as I can remember. I’ve always had a lot of hair and a fringe to hide my forehead, so no one is 100% sure how and when it first appeared. My mum recons it started when I was about 4, which is when she took me to see a doctor to have the full-grown dent looked at. The general practitioner said I’d probably bumpt into something playing around... And that was it!!

 

Since then a few years have passed (I’m 29 now) including teenage years when I hated not being as pretty as other girls. Whenever I was asked about my dent, I’d get very cross and go off sulking, but really I was devastated.

 

While reading up a different medical topic (I’m a vet) I looked at some human skin conditions and stumbled across a photo of a person who looked just like me! I went to a dermatologist who didn’t think anything of it and sent me back home. This was about 4years ago.

 

But I couldn’t let the idea go, that I might have en coup de sabre, so 6months ago I showed the photo to a friend of mine (a general practitioner) and asked her about it. She didn’t realise I had a condition very similar to the woman on the photo, because luckily I still have loads of hair hiding my dent (all the way down to my left eyebrow) and my bold spot. She hadn’t ever heard of en coup de sabre, so we did our research together… After that she had my bloods checked (ANA etc.), CT of my cranium and an MRT done, to make sure I didn’t have any underlying brain issues. She managed to arrange all this within 2weeks (great having my general practitioner as a friend!!)! After all of these tests she sent me off to a specialist to confirm what we had diagnosed before. And yes, it is en coup de sabre. I’m so glad I’ve finally got a diagnosis! I do wonder though how many people are out there not diagnosed properly.

 

My condition has not got worse since I was young and I am healthy otherwise. Which brings me to my question: Me and my partner are thinking of having kids one day and I haven’t got a clue what to look out for during pregnancy, also I can’t find anything in the literature stating my kids could get the same illness (or maybe a worse form…). Can you help me? Perhaps you’ve had en coup de sabre all your life and you’ve had children without them being affected? I’d love to hear from you!

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Emma123, welcome to ISN forums. I am happy you have made yourself at home here and enjoyed looking at some of our medical pages. I am sorry that it has taken so long for someone to clue you in on what the sabre running down your forehead was. I guess when people don't have severe enough symptoms everything is suppose to be ok. I am happy to hear that in all these years you haven't had other medical issues to deal with besides this facial scarring. Hopefully, someone will write to you that has personal knowledge about this and hopefully answer your questions.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Hi Emma,

 

Welcome to these forums!

 

Thanks very much for sharing your story with us; it must have been quite a relief to eventually find out the exact nature of the dent along your forehead and have a diagnosis, albeit a very unusual one! Certainly there must be many patients who do not have your access to the knowledge and expertise to make a correct diagnosis.

 

I've included our link to En Coup De Sabre and also another link on hereditary deficiency of C2 in association with linear scleroderma and Familial linear scleroderma . Although they don't answer your query directly regarding any children you may have possibly inheriting the condition, I hope you'll find the articles helpful and informative.

 

We may have other members who will be able to give you more first hand information. Do please keep posting and let us know how you're faring.

 

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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Thank you Jo and Sheryl for your warm welcome and thank you for your help showing me different links!

 

I’m impressed with the amount of info gathered on this site. I’m sure I’ll find a lot of helpful postings.

 

Hope you’re having a lovely sunny weekend like we are in Berkshire, UK! :VeryHappy:

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Is it possible to have both CREST and en coup de sabre? The reason I ask this is because it is very possible I have CREST (still getting tested), but a few months ago, I noticed what could only be described as a dent in my forehead. I thought maybe it was some veiny thing, because there seems to be a noticeable vein there, but there's also a dent.

 

There's a second one that's started on the other side of my forehead, although not as noticeable.

 

But these have come on recently, and it seems that en coup de sabre is usually present from a young age. I definitely didn't have these when I was younger. Also, it seems like people usually only have one dent, not more. But I may ask about that the next time I see the rheumatologist. Because it is very strange.

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Hello Emma

 

Welcome to the forums! So it took you 25 years to get a diagnosis then? Well that calls for an award :balloons: as that must be once of the longest ever, certainly the longest I have heard of! Good on you for persevering.

 

Take care and keep posting.


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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Hi Emma,

 

Welcome to Sclero Forums! Yes I agree with Amanda, I think you must be due an award of sorts. How about:

 

:you-rock: :emoticons-yes:


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.

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Hello Emma,

 

I just joined this forum after reading your post and your question about having en coup de sabre and having children.

 

First let me say that I am a mom of 4. My oldest is 12 and youngest is 5. I fully understand your concerns. I remember when I first realized that I was pregnant with my first child. I remember the fears that I had about what she would look like. I had this fear because every since 1st or 2nd grade I had this indentation on my face that ran from the top of my forehead to the tip of my nose. I never knew what it was. My mom never knew what it was. She did take me to the dermatologist and he told her it was the mark of a sword, and of course she thought he was crazy. So I never had any concrete answer of what this thing was on my face and had nothing to tell anyone when they questioned me about it.

 

Last year about March/April, I came home from worked looked in the mirror and for the first time in a long time started to wonder what this was on my face again. I pulled out my laptop and started googling things like scar on face and whatever else I could think of. I clicked on the image tab of one of my searches and low and behold there was a woman on there that had a scar that look exactly like mine. ( I had never seen anyone else with this exact mystery scar) Then there was a description about en coupe de sable and what the french term meant and let me tell you, the tears started coming from my eyes. I had all sorts of emotions. I immediately started looking for "seasoned" dermatologists that may be able to officially diagnose what I had just found out. (only because I had been to dermatologist before and none of them believed that I wasn't in a serious accident or anything of the sorts.) I was almost 35 when I was diagnosed and believe me I called all my family and friends and let them know because it was always a mystery. It was such a relief to finally know what I had (even though the initial dermatologist my mom took me to did have a clue and he didn't explain anything to my mom and she thought he was coocoo; lol! )

 

I told you my history to say to you, that none of my children have en coup de sabre. I'm not sure if there is anything genetic or any traits that can be passed on with en coup de sabre. From my knowledge, I was and still is the only one in my family (on both sides) that has this problem. I've lived a very healthy life, no major complications and I have a very beautiful family. Since finding out, I am not really ashamed when I'm asked about the scar and on some occasions, I've even been bold enough to wear my bangs away from my face, showing my little bald spot. I am who I am and for the first time I am truly embracing it.

 

 

I hope that any children you have in the future are healthy and beautiful, with or with out en coup de sabre :bye:

 

Layota

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Hi Layota,

 

Welcome to these forums!

 

Thanks for letting us know your story and your encouragement for anyone who is concerned as to whether their children might inherit en coup de sabre. It's a shame that you've had to deal with such an unusual disease but it must have been a relief to you when your children were born without this condition..

 

At least now you've been able to come to terms with it and enjoy a full life.

 

Do keep posting and let us know how you're faring.

 

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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Hello Layota

 

Welcome to the forums and what a wait for a diagnosis! En coup de sabre is a form of localised scleroderma and thus far the medical community say in general scleroderma is nor hereditary although their is a rare type of scleroderma called familial progressive systemic sclerosis that can run in families BUT that's a systemic form of scleroderma and en coup de sabre is a localised form of scleroderma.

 

Good on you for embracing your disease, it's been with you for so long and you have still had a most excellent life and I hope you continue to do so.

 

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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My name is Scott and I like others in this post have had en coup de sabre since 4 years old. I am now 42 and have 2 boys 15 and 16. It's a strange comfort to know there are other people with the same variant as me.

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Hi Scott,

 

Welcome to these forums!

 

It's always encouraging to hear from members who've been coping with this bizarre disease for many years and now you've joined our forums you'll find that there are many others with whom you can identify.

 

Do please keep posting and let us know how you're faring.

 

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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Hello Scott

 

Welcome to the forums! Strange comfort eh? More like strange people here for sure! :lol: :lol: I am proud to count myself in that and glad you've joined us.

 

Take care and keep posting.


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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Hi Scott,

 

Welcome to Sclero Forums! I'm very glad you found us.

 

You've had en coup for so very long. I've heard that sometimes en coup can keep progressing. Has that happened in your case, or did quiet down at some point?


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.

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Hello,

 

My name is Cheryl and I was diagnosed in January of this year with linear morphea (coup de sabre) on my forehead.I really noticed a discoloring of the right side of my forehead last summer and was told by my doctor it was melasma (hyper pigmentation from hormones). As time went on I noticed that the same brown area became dented with a fine line on the edge of it (as if somebody hit me in the head with a 2 X 4. A few people started noticing it so, I knew something wasn't right. After a biopsy to rule out other possible areas of concern it was determined that it was linear morphea.

 

My dermotologist put me on a drug called Aldara for two weeks but, I didn't feel good and after doing some research on the internet I was very concerned with this drug. When I told the doctor this she said it was the drug or nothing. The drug was just to change the color of the morphea (cosmetic) and nothing else therefore, I said no to treatment. I live in Canada and the weather has been very hot and humid this summer and my coup de sabre has been hurting and I am tired and seem to catch whatever virus my 2 daughters (5 & 8) bring home from school. Does anybody else get pain or feel like they catch colds etc.. easily. I am a very healthy person and exercise daily and yet, I feel awful and without options.

 

I am very thankful for finding this forum as I feel very alone and isolated. My husband is very supportive and yet I find myself glancing around in crowds to see if anybody else has what I do. I am not ashamed of my scar as, I have stopped putting my bangs down and pinning them up (looks better with my face :-) I try to live my life to the fullest but, I do get down and wonder if others have the same experience and feelings as me.

 

Cheryl

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Hi Cheryl,

 

I want to welcome you to Sclero Forums. I am very glad you found us and hope that you can now feel less alone.

 

Have you seen a scleroderma expert yet for your en coup? Of the localized forms of scleroderma, linear/en coup tend to be the most troublesome if they are not treated promptly, as correct treatments may help delay or avert worsening.

 

Here are some warm, welcoming hugs, for you.

 

: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.

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Hi Cheryl,

 

Welcome to these forums!

 

I'm sorry to hear that you've been diagnosed with en coupe de sabre and are feeling so worried and anxious about it. It can feel very isolating to discover that you have an unusual and bizarre disease and I can understand how debilitating it is. I've included a link to some of our patient and caregiver stories for en coupe de sabre which I hope you'll find interesting. We do also include treatments on the link that Shelley has given you and I would echo her advice that treatment for any form of Scleroderma is better started early than late.

 

Now that you've joined our commumity please continue posting and do let us know how you are faring.

 

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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Thank you, Shelley and Jo, for the warm welcome. The dermatologist I saw had the most experience in the city with en coup de sabre and because of her research with Aldara she gave me no other options. I honestly thought it started last summer but, I went back through pictures and noticed that it started in about 2007. My doctor really feels that it is done its course and that all that I am left with is the scar therefore, no treatment is required. I was told it can cause seizures in some patients as well as lung problems.

 

Is there such a thing as doctors that just specialize in scleroderma? I did see a rheumatologist to rule out systemic as my hands feel arthritic in the winter and he said I have poor circulation. It gets very cold here in the winter and I know that is hard on everyone's bodies.

 

Thank you both for the links. I will check them both out. What comfort to know that I am not alone. :).

 

Cheryl

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Hi Cheryl,

 

Is there such a thing as doctors that just specialize in scleroderma? I did see a rheumatologist to rule out systemic morphea as my hands feel arthritic in the winter and he said I have poor circulation.

 

We do recommend that our members do consult a Scleroderma specialist if possible and I've given you another link to keep company with the one Shelley's given you.

I'm very glad that you're feeling better having joined our community. :emoticons-i-care: :emoticons-group-hug:

 

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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Hi Cheryl,

 

Please note that only a few of the scleroderma experts actually see or treat those who have localized forms of scleroderma (such as morphea, linear, and en coup de sabre). You'll see in our new ISN Guide to Scleroderma Experts, we specify on each listing whether or not they treat localized forms and/or people under 18. It's great that things are stable for you now but you do have the type of localized most prone to causing further problems later on. Most scleroderma experts are rheumatologists, but most rheumatologists have very little (if any) experience with scleroderma.

 

As long as you are stable now, and not in need of any treatment, you may want to file this info on the scleroderma experts away, in case you do need it some day. Then make sure you have a good primary care doctor who can help refer you if you ever do develop any of the peskier complications of en coup.

 

I'm very glad you've found us, so that you no longer need to feel alone!

 

: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.

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Hi,

I'm Kate and live in Wiltshire. I was diagnosed with en coup de sabre in February; it seemed to come on over night; my doctor was very good and got me in to see a consultant within 2 weeks. I had a blood test, biopsy and MRI scan which just confirmed the en coup de sabre. I am presently taking mycophenolate twice a day for this; don't know if it's doing any good but I see my consultant every 6 weeks for check ups and he takes photos to compare hair loss and dent progression; it seems slow but who knows what will happen. He told me that this is very rare and would possibly not find anyone else with the same condition in the UK which was scary as having an illness that you know very little about and being alone with it is not a nice thought. I am 33, married and have a son of 3 who luckily does not have the same condition. It would be great to talk to someone with en coup de sabre who knows what I'm going through.

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Hi Kate,

Welcome to the right place to talk about your illness. We seem to have a run on new members with En Coup de Sabre and at least one is in the UK. Your Doctor was probably a bit pessimistic saying there could be no others in the UK because we know of some.

 

There is a current thread somewhere here and I am sure Joelf will give you a link to it. I am absolutely hopeless with these things so leave it to the experts.

 

I understand your concern about your wee boy but I am sure you will soon learn that Scleroderma is usually random and very few people have a family history of it. Although to be truthful Systemic Scleroderma has been known to exist in more than one generation of a family.

 

I see that your practitioner is being very helpful but it would probably be of benefit to you to find a Scleroderma Expert near your home. You are lucky in the UK that there are some very good people available. We have none here in NZ that I know about.

 

Best wishes for a good outcome for you.

Judyt

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Hi judyt,

It would be great to be able to talk to some one with the same condition in the UK; it was really good to find this forum and the support here seems really genuine. Let's hope they can do some more research into en coup de sabre to make it easier for those in the future and find a drug that actually works and not just one that they think may help a bit x

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Hello Kate

 

I am sorry I haven't come in to welcome you earlier!

 

It's not helpful for your doctor to say you may be the only person in the UK! You most certainly are not the only person in the UK with scleroderma, although not many have en coup de sabre, but you won't be the only one.

 

Have a look at the Scleroderma Society, if you haven't already, they run local groups throughout the country, you don't have to be a member of the Society to attend and you can attend any group you like, there are no boundary issues! I host the group for Essex, London & Kent, you're welcome to join us but it may be a bit far, eh?

 

Take care and keep posting.


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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