Emma123

En coup de sabre.

80 posts in this topic

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

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 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.

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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

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

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(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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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

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 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.

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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.

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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

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 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.

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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!

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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)

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Hi Hello (or whatever...),

 

Welcome to Sclero Forums! I'm sorry you have concerns about Parry Rombergs.

 

I'm really stumped for how to respond though, as it is quite a jump to go from a very slight dent in forehead to Parry Rombergs, in a single leap. So part of sorting this out might be to ask yourself if you are prone to making a mountain out of a molehill, if you tend to obsess about your health for a hobby (since you referred to Internet paranoia, which some of us do suffer from more than others), or not? Well, don't accuse yourself of making it all up. Figure out the fact of the matter for yourself. Here's how:

 

One way to nail it down, would be to take excellent photos of it, today, and include a measuring stick next to the indentation in some photos. If it is a new and active lesion, it will very likely show some expansion in the near future. So also mark on the calendar to take photos of it again in 30 days and 60 days from today, including the measuring stick.

 

This will help you in every way. First, it allows you 30 days between time to forget about it, which is extremely nice when it comes to the Internet paranoia angle that concerns you. Second, it allows you to document it, both for yourself and, possibly, for your doctors.

 

Then if it does grow, you will know it for a fact and not waste valuable time accusing yourself of just imagining the growth. And you will have indisputable documentation for your medical team. And in that case, it would then be quite appropriate to find an expert in en coup de sabre or Parry Romberg's (some experts believe they are the same illness). The good news is that there are treatments available and unless it grows at warp speed (which you'll know about too, having documented it), several months is plenty of time to establish that you are on solid ground in trying to pursue a diagnosis.

 

Is it a deal, will you take photos of your forehead tonight, alongside a ruler, and will you check back to Sclero Forums at the 30 and 60 day mark, to let us know if the spot is worsening, or not?

 

: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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I suppose I could do that. (Though the pics will come tomorrow as its almost 1am here). But quick question- why do some doctors think coup de sabre and Parry Rombergs are the same? People with coup de sabre don't always report the unilateral facial deformity of Rombergs. Also, you mentioned treatments, could you please go into detail because I've read that it's pretty much hopeless. I'm just hoping that since I'm not necessarily in the core group that typically is effected by this sort of thing that its nothing serious.

 

Thanks again

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Hi Hellohello,

Welcome to these forums!

I'm sorry to hear that you're experiencing concerns about en coup de sabre and Parry Rombergs Syndrome. I'm afraid I can't really add anything to Shelley's reply but to help you with the queries in your last post I've included a link to our medical pages on Parry Rombergs Syndrome. This also includes a section on treatments which I hope you'll find helpful and informative.

As Shelley has suggested, please let us know how everything is progressing.

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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Thanks to those who have responded but I have another question- is there anything else this could be? Because yes, I do seem to often make a mountain out of a molehill and am wondering what it could be since I'm not a female, I'm not between ages 5 and 15, and this thing affects what, 1 in almost a million people I heard? I'm just very paranoid

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Hi Hellohello,

 

I'm sorry that you're so worried; I'm afraid that I can't really advice you as to what you're actually suffering from, as although I enjoy telling my long suffering doctor how to do her job, I actually have no medical training apart from an out of date first aid certificate (handy should I need to splint a broken leg, but not much use otherwise!! ;) :lol: )

 

The only thing I can suggest is that you go back to your doctor and discuss your symptoms further with her. Perhaps if she's unable to help you she could refer you to someone who can?

 

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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