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Biomarker for Diffuse Scleroderma skin has been discovered!


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En coup de sabre.


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#21 Shelley Ensz

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Posted 26 July 2012 - 04:44 PM

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.

#22 katchan

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Posted 28 August 2012 - 12:42 PM

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.

#23 judyt

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Posted 28 August 2012 - 04:51 PM

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

#24 katchan

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Posted 30 August 2012 - 11:50 AM

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

#25 Amanda Thorpe

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Posted 01 September 2012 - 04:09 PM

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
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#26 Shelley Ensz

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Posted 06 September 2012 - 12:27 PM

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.

#27 Florence

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Posted 09 October 2012 - 10:15 AM

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

#28 Joelf

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Posted 10 October 2012 - 12:05 AM

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,

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#29 JETIV4

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Posted 10 October 2012 - 09:35 AM

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

#30 Shelley Ensz

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Posted 10 October 2012 - 10:11 AM

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.

#31 Joelf

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Posted 10 October 2012 - 10:38 AM

Hi Joe,

Welcome to these forums!

It sounds like you've been having a bad time and I'm sorry to hear that you've been diagnosed with en coup de sabre and have also had cancer.

As Shelley has advised you can post before and after photos in our Photo Gallery and you could include links to them from your posts. Do let me know if you need any help with that!

I'm looking forward to reading your future posts.

Kind regards,

Jo Frowde
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#32 JETIV4

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Posted 10 October 2012 - 10:47 AM

Thank you Shelley for welcoming me to the site. I believe this was the first site and probably the best site I have found regarding the disease. It was this site where I first read about some of the obscure treatments available.

I guess I would have to call myself vain, because I am the type of person that will not accept no for an answer and will try anything to cosmetically treat the side-effects of the disease. In my search, I found a great surgeon here in Northern Alabama that was right in-line with my thoughts. And after having dermatologists that would not listen to my needs and insisting on artificial brand name fillers to temporarily fix the problem, this Doctor is the first that put my needs first and agrees with natural treatment as a potential long term solution. However, we will see and I will post the pictures and write a post on this blog to inform everyone once they are viewable. I do know there is interest in recent photos and many people curious of treatment outcomes.


#33 Amanda Thorpe

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Posted 10 October 2012 - 12:55 PM

Hello Joe

Welcome to the forums and thank you for offering to share your story including before and after photos. A few months ago I posted about localised scleroderma because it's often overlooked (not on this forum!) and subsequently the effects of it under estimated and I included photos of my morphea patches. The photos don't do them justice the patches are massive (well some are) and some are weird shapes, not nice and round, like I've been burned by some sort of liquid that's dripped!

The more people like yourself share their story(s) the better for other people with localised forms of scleroderma. I hope you treatment is successful and that you will continue to post.

Take care.
Amanda Thorpe
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#34 Amanda Thorpe

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Posted 10 October 2012 - 12:57 PM

Hello Florence

Welcome to the forums and thank you for sharing your story, it's so helpful to others who also have the same disease as you. It's rare, as you know, and the more people talk about it the better.

Take care and keep posting.
Amanda Thorpe
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#35 Shelley Ensz

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Posted 11 October 2012 - 12:19 PM

Hello Florence,

I'm sorry that I missed you, earlier in this thread. Welcome to Sclero Forums! I'm sorry you have en coup de sabre, but very glad that you have joined us!

: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.

#36 KAS1373

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Posted 06 November 2012 - 02:36 PM

Hi. I was diagnosed with En Coup de Sabre in December 2010 when I was 37. I had symptoms 8 years prior to diagnosis which started initially with a narrow slither of hair loss on the right hand side of my scalp which was hidden by the rest of my hair, so I wasn't too concerned and didn't seek Medical advice. It was only when I noticed I was losing hair from my right eyebrow too and that the hair loss all seemed to follow the same line of my head and face I went to my general practitioner. I have been taking methotrexate in varying doses since diagnosis as the En Coup de Sabre still appears to be active and I have a slight indentation in my forehead. I see my Consultant approximately every 4 months to monitor the situation. I was interested to read Kate's post, as I also live in the UK, and have also been told it is a rare condition, but no one seems to be able to confirm how rare. One in how many people have it? I'm particularly keen to understand if En Coup de Sabre is hereditary as I have two young children. I struggle with the 'not knowing' with this condition ... will it get worse, how long will the progression last ...? lots of unanswered questions.

#37 Joelf

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Posted 07 November 2012 - 02:19 PM

Hi Kas1373,

Welcome to these forums!

One of the worst problems with Scleroderma (and particularly en coup de sabre) is that it is so very rare and many rheumatologists have very little knowledge about it.

Here's a link to a thread started by Katchan (Kate) on en coup de sabre on the UK sub forum; I don't know whether you've been able to view that as well as Kate's post but I hope you'll find it informative, as well as helping to answer some of your questions in the other links in the earlier part of this thread.

Do please keep posting and let us know how you get on with your next consultant's appointment.

Kind regards,

Jo Frowde
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#38 Shelley Ensz

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Posted 08 November 2012 - 01:52 PM

Hello KAS,

Welcome to Sclero Forums! I'm sorry you have en coup de sabre, but I'm very glad that you managed to get it diagnosed, and treated. It's pretty hard to determine "how rare is rare", but you have a rare variant of a rare disease, which makes you mighty special!

: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.

#39 hellohello

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Posted 08 November 2012 - 08:04 PM

Hello everyone, I hope maybe somebody can offer some words of wisdom. I noticed for the first time about a week ago a small dent in my forehead, slightly to the left of the center of my hairline. It travels about an inch into my hair and about an inch down my forehead. It is very shallow, and I had to touch it to notice (And I look in the mirror often at the same area to look at my hair...). It is not noticeable unless you're looking for it (as I have been) and it causes no pain or anything. Also, the same side of my face does seem slightly "skinnier" than the other side, but this seems pretty common and even my brother has a more full side on his face. I guess internet paranoia has me afraid of having Parry-Romberg or something like it. I don't know how long the dent has been there and when I called my doctor she didn't seem concerned but said what I described brings nothing to mind.
Any help?

Thanks!

#40 hellohello

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Posted 08 November 2012 - 08:06 PM

Oh and sorry I forgot to add that I am a 21, almost 22 year old male with no family history of this or any autoimmune diseases that I know of. (If that helps)