Emma123

En coup de sabre.

80 posts in this topic

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

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

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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Hi Kate,

 

Welcome to Sclero Forums! I'm sorry I missed greeting you earlier. Although I don't have en coup, you will find a few members around here who have en coup. We also have a section on our main site with many personal stories of people with en coup de sabre scleroderma. I'm sure you will be able to relate to many of their stories.

 

I'm glad that you managed to get diagnosed promptly and that you are on a treatment program...and I certainly hope it is effective for you. Do you have any tips for others who have en coup?

 

: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,

 

En coup de sabre and in the UK! Don't feel alone!

 

I am now 18 and was diagnosed when I was 12. The dent/discolouration appeared gradually from the age of about 7. No one really noticed until I started a new school, I went to the general practitioner and was referred to a plastic surgeon who diagnosed me straight away. I realise now, from reading all these stories, how lucky I was to have such a well-read consultant!

 

Florence

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Hi Florence,

 

Welcome to these forums!

 

I'm sorry to hear that you've suffered with en coup de sabre from such a young age but how very fortunate that you were able to be treated by an able general practitioner and plastic surgeon. It's certainly a bonus to have a medical team in whom you can have confidence!

 

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

 

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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I’m a 39 year old male that was diagnosed with En Coup De Sabre when I was 37. My diagnoses proceeded BEP chemotherapy due to cancer and a diagnosis of Raynaud’s phenomenon following my treatments. I have read about everything I could find about the disease and as you all know there is not much out there; however, I have found some information linking both my treatment with chemotherapy (Bleomycin) and Raynaud’s as commonalities with others that too have the disease.

 

My case started with a white streak extending from the middle of head down to one inch above the eyebrow. Over the three years, I have had contact with many dermatologists and was treated with corticosteroids and topical steroids. In my case I believe the corticosteroids caused more problems than it was worth. I think it caused atrophy much sooner than if I let the disease play out its course. But this is all conjecture at this point.

 

I will receive fat transfer surgery from a plastic surgeon in November to treat the area and would like to continue to share my story and offer before and after photos with anyone that is interested. I am sure that I would need guidance from the site administrator to afford everyone the opportunity. Thanks for reading.

 

Joe

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Hi Joe,

 

Welcome to Sclero Forums! I'm sorry you have en coup de sabre -- and that you've had cancer, too -- but glad you found us. As you mentioned, Bleomycin is a known cause of scleroderma.

 

I hope that your surgery goes well. You can post photos in our Photo Gallery, if you'd like. Some befores...and afters...would be nice.

 

: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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