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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 zomby

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Posted 20 July 2013 - 06:53 AM

Hello everyone I hope you are all good.
As the topic header suggests I am new here and new to Morphea.

My story,

I'm 24, from UK and female, I was diagnosed with Morphea two years ago after being scared to go to my general practitioner for almost two years prior to my diagnosis in fear of cancer and my first show was on my chest below my collar bone. I had no idea what was going on in my life at that time and was going through some pretty turbulent stuff so I put the strange 'bit' to the back of my head until one day I figured I had best get it checked. So I did just that; I had the usual wait to see if it fades, blood test, more blood tests, more waiting, biopsy of the area, which now kinda looks like a bullet wound; my friends and I make the joke that it is the only hit Chuck Norris got to me before I beat him in a thumb war haha. After the test results came in I was diagnosed with Morphea; however, my doctor told me nothing about it, just that it was a skin disorder and to put some ointment on it. I was given for 6 months then I'd be fine, it was only last night I actually researched it on my own to find out the skin disorder I have which I thought was more like eczema was in fact not. So I'm sitting here confused and dazed, perplexed and troubled over why I wasn't given all the information and that I'm not 100% sure what type of morphea I have. It's scary.

 

Not only that but I have in the past year found more illness in me and now after many tests regarding my new symptoms I have no idea if it's all connected and there's a bigger scarier picture waiting to unfold around me.
I come here today humble and in need of clarity and support and I thank you all for it.

Thank you and hello :)



#2 Joelf

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Posted 21 July 2013 - 12:35 PM

Hi Zomby,

 

Welcome to these forums!

 

I'm sorry to hear that you've been diagnosed with Morphea and that you're feeling worried and anxious about it. Morphea is a form of localised Scleroderma and although it is possible to have both localised and systemic Scleroderma, as Amanda can testify, it's still very usual to experience both. The link I've given you includes one of Amanda's excellent videos on the subject.

 

Unfortunately many doctors do not understand all the idiosyncrasies of a complex disease like Scleroderma and we do recommend that our members, if possible, consult a Scleroderma expert. There are treatments for morphea now, especially UVA1 which is recommended as a first-line treatment for morphea (see Morphea Treatments. ) I've included links to another thread about improvement with  UVA-1 treatment and also to a thread "My story so far" regarding morphea which I hope you'll find interesting and informative.

 

Kind regards,


Jo Frowde
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#3 Amanda Thorpe

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Posted 22 July 2013 - 10:37 AM

Hello Zomby

 

Welcome to the forums! Indeed I do have both systemic and localised scleroderma, I have countless patches of morphea on my arms and legs. Other than moisturise I do nothing with it unless it's the bullous morphea which I also have (rare!) and I have leg ulcers from the blisters bursting, this was responsible for my last 2 bouts of cellulitis.

 

Apparently UVA-1 Phototherapy can reverse the skin effects of scleroderma but I wonder if there's a scarcity of NHS medical facilities here in the UK where you can receive it.

 

I hope the links Jo has provided help you and take care.


Amanda Thorpe
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