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Biomarker for Diffuse Scleroderma skin has been discovered!


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New Lesion


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#1 Louxx

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Posted 16 August 2014 - 12:13 PM

Hi,

I've just discovered a new lesion of dry skin right next to my current skin where I have scleroderma. I haven't had new patches in over 15 years.

Has anyone experienced this or do you think it could just be dry skin? I never thought I'd get more scleroderma patches again!

Thanks,
Lou x



#2 Amanda Thorpe

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Posted 16 August 2014 - 02:46 PM

Hello Lou

 

Nice to hear from you. what type of scleroderma do you have, localised or systemic?

 

I have had diffuse systemic scleroderma, morphea and bullous morphea for 7 years now and I conclude that there's nothing set in stone about this disease...apart from us! When first diagnosed I used to hear that scleroderma would become inactive after 3-5 years, well not only is this not my experience but I don't know of anyone who has experienced this.

 

Scleroderma can wax and wane for sure but other than that it's anyone's guess! Everyone is so different! I have had areas of skin softening and I have also had areas of skin tightening and hardening. For example, the skin on my feet has been tight and hard for 7 years but the skin over the tops of my big toes softened somewhat, so much so that I could point them upwards, then suddenly they got real tight again, then they softened, then they tightened up again and now move very, very little. Does sometime make me wonder what's going on inside... I remember reading here about a lady who had been on mycophenolate 10 years as every time she tried to quit it her skin would tighten and harden.

 

In conclusion I think anything is possible with scleroderma.

 

Take care.


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#3 Joelf

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Posted 17 August 2014 - 01:28 AM

Hi Lou,

 

How lovely to hear from you again, although I'm sorry that it's because you're suffering with new symptoms.

 

I can't really advise you from my own experience regarding the skin lesion with which you're having problems, as thankfully I have very little skin involvement (merely the tips of my fingers). However, as Amanda has advised, nothing about Scleroderma follows the norm, so it could be quite likely that this patch might relate to the disease. Perhaps if you are concerned about it, then it might be worth contacting your consultant to see if he can give you any help or advice about it.

 

Please do post again and let us know the results of any consultation you have.

 

Kind regards,


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#4 Louxx

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Posted 17 August 2014 - 12:14 PM

Hi,

Thanks for your replies :)

I'm going to book an appointment with my Gp next week and mention my concerns. Unfortunately I don't have a consultant where I live who knows about my Scleroderma. I've recently relocated to Scotland and my medical records are still in Ireland. So hopefully they'll have heard of it before.

My scleroderma is not systemic, I believe it is linear but I don't have any other information than that because as an adult the only information I was given was a printed out sheet describing the different types of linear scleroderma. (Before that my parents would have been told about it, and sure they probably can't even say the word scleroderma let alone know what type it is)
My scleroderma is only skin involved but does cause an issue with underlying muscle.

Anyway, when I get checked out I'll pop back and let you all know how I got on. :)



#5 Amanda Thorpe

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Posted 21 August 2014 - 12:12 PM

Hello Louxx

 

Well we have loads of information about linear scleroderma, including a video if you want to have a look. There are specialists in the UK but only one in Scotland.

 

I hope your appointment goes well and keep us informed.

 

Take care.


Amanda Thorpe
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#6 Shelley Ensz

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Posted 06 October 2014 - 02:12 PM

Hi Lou,

 

I'm just swinging by to say hello, and welcome to Sclero Forums!  Do you have any update on your scleroderma situation?

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.