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Biomarker for Diffuse Scleroderma skin has been discovered!


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Any Kiwis out there?


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#1 catmac

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Posted 25 August 2012 - 06:40 AM

Hi, I'm a 42 yr old woman diagnosed with en coup de sabre in 2009 after 18 months of visiting the Dr with unusual complaints such as neuralgia (only on one side of my head), a strange dent (on the same side) that was gradually turning lilac. I'm sure the Dr thought I was just a hypochondriac until my left eyebrow started disappearing. At first it was just a line through it but 3 years later I only have a third of it left! and have recently started to lose a portion of eyelashes also. I have become very good at penciling in my eyebrow disguising it and the big bald spot in my hair and most people are very surprised to learn that I have this most unusual disorder. I have had great difficulty finding anyone who specialises in en coup de sabre (only one general practitioner I've seen had even heard of it!)

I wanted to know if there were any fellow Kiwis out there as I've felt very alone. It would be great to chat with someone who has some understanding and to find out if there is a specialist in New Zealand worth consulting.

#2 Joelf

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Posted 25 August 2012 - 08:19 AM

Hi Catmac,

Welcome to these forums!

I'm sorry to hear that you've been diagnosed with En Coup de Sabre. Coincidentally, we have a current thread on En coup de Sabre and also a slightly older one here which I hope you'll find interesting and informative.

We do have Judy, one of our ISN Support Specialists, who hails from New Zealand and I'm sure she'll be along shortly to give you some more specific advice regarding Scleroderma specialists, but I understand from her previous posts that unfortunately there does seem to be a deplorable lack of Scleroderma experts in New Zealand. We do also have other members from New Zealand as well.

Now that you've found us, do please keep posting and let us know how you are faring.

:emoticons-group-hug:

Kind regards,

Jo Frowde
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#3 judyt

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Posted 25 August 2012 - 04:14 PM

Hello catmac,
First of all welcome, but a shame we have to meet because of our disorders!! I have CREST or Systemic Sclerosis as it seems to be called these days. It took me a very long time to get a diagnosis which happened in 2003 so I have had a few years of knowing what is wrong but as far as I know there are no specific experts here in NZ. I have had adequate treatment since my diagnosis and in fact for me the damage was all done by 2003 and so there is really no urgency to get more informed help.

You don't say where you live, but I am in Auckland and these days attend Auckland City Hospital.

There is a Scleroderma Support Group in Auckland which I have never joined because they meet on a Sunday and somehow I like to keep my Sundays free for family time. There is also a Group in Wellington which I found on the Arthritis website.

If you would like to you can send me a private message through this site and we can swap more specifics.

Best wishes
Judyt

#4 Sweet

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Posted 07 September 2012 - 09:42 PM

Hi Catmac,

Welcome to the forums. You most certainly are not alone! You'll find that Judy is wonderful first of all, and she is in NZ, but you have a whole world of us here that can completely relate to that you are going through.

I've been to NZ 4 times in the past 4 years, and it's beautiful. Where are you located?

I look forward to getting to you know better.
Warm and gentle hugs,

Pamela
ISN Support Specialist
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#5 Amanda Thorpe

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Posted 08 September 2012 - 03:45 PM

Hello Catmac

Welcome to the forums! Unusually there have been a few topics about en coup de sabre recently. As you say it is rare, even within the realms of scleroderma. I am glad you're able to hide the changes it has made to your face and you sound as if you're more than up to the challenge it presents.

Take care and keep posting.
Amanda Thorpe
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#6 catmac

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Posted 07 April 2013 - 08:44 PM

Hello again. Life has been so busy and I've just reconnected with this site while having some time off work.

Judy, I would really like to touch base with you sometime, please let me know how to private message.

I live in the Far North of NZ and have to travel 4 hours south to Auckland usually to see a Specialist. I have seen two Dermatologists and one Rheumatologist, but none of them seem to have any real answers for me. Two of them even told me it was up to me to decide when I needed to go back on medication!

Since being diagnosed in 2009, I have had two stints of a year each on medication. The first stint reversed the hair loss in my eyebrow, but as there was a delay in me starting the second stint of medication, the subsequent hair loss has been permanent.

It would appear I'm going to have to begin a third stint, as my hair loss on my scalp and eyebrow is increasing again. Also, it seems to have progressed into my eye area. I have lost the innermost upper eyelashes and had more tissue deterioration. Despite both Dermatologists telling me En Coup de Sabre doesn't affect that area!

I feel totally on my own and am worried if this will ever stop it's progression. I'd read it was only active for 2 - 5 years, but it's now been 5 1/2 years since I first noticed symptoms.

I would really like to make contact with someone else suffering from this form of Scleroderma.



#7 judyt

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Posted 08 April 2013 - 02:28 AM

Hi Catmac,

 

Nice to hear from you again.   Have you had any rain your way yet??   We have been enjoying the wonderful summer but it is time for some rain before we all dry up to a frizzle.

 

Yes it would be nice to keep in touch with you so if you would like to PM me it is quite easy.   Go to the top of the home page and second button in from the left is Members.   Click there and you will get the members list.    Go down the side bar to J then start scrolling through until you get to my name, judyt.   Double click there and you will bring up my profile.   On the right there is a button 'Send me a message'.   Click there and you will bring up a message page.

 

I look forward to hearing from you and will do my best to help you with what you want to know.

 

Judyt



#8 judyt

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Posted 08 April 2013 - 02:31 AM

OOps forgot the easy way!! :emoticon-dont-know:  Just double click on my name in the blue bar above my message.   Duh!!

 

Judyt