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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 fitorfat2

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Posted 25 January 2015 - 11:41 PM

I am new here and newly diagnosed with Morphea Scleroderma. I was diagnosed about a year ago when I thought I had skin cancer. I saw a dermatologist who told me that there was no known cause or cure for this condition, so I've done nothing but try to live my life to the best of my abilities. Yesterday was a horrible day for me. Pain radiated throughout my body, hands and fingers swollen and I couldn't stop crying. The skin on my stomach and tops of my thighs are covered in what looks to be old bruises and they itch like crazy sometimes. I am not sure what my next step is. Can someone please direct me?

#2 Joelf

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Posted 26 January 2015 - 11:42 AM

Hi Fitorfat2,

 

Welcome to these forums!

 

I'm sorry to hear that you've been diagnosed with Morphea Scleroderma and are experiencing such unpleasant symptoms.

 

We do recommend that our members, if possible, consult a Scleroderma expert, as it does require specialist knowledge to deal with this unusual disease. I've included a link to our medical page on Morphea Treatments and although strictly speaking there is no cure for Morphea, UVA1 phototherapy is now the recommended first-line treatment for it.

 

We also have two very useful topics about Morphea, written by Amanda Thorpe in our  UK Scleroderma Support Resources which I hope you'll find helpful and interesting. Amanda suffers with Morphea  as well as Systemic Scleroderma, so is able offer you some first hand advice as well as a series of Scleroderma Videos , especially about  localised scleroderma, morphea and linear.

 

Now that you've joined our community, I'm sure you'll find lots of help and support from our members.

 

Kind regards,


Jo Frowde
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#3 fitorfat2

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Posted 26 January 2015 - 12:08 PM

Thank you so much for the reply. I went ahead and watched the videos, very informative. Since we do not have health insurance I will contact the specialist in my state to figure out some costs so I know what to expect. Thank you again, I think I will enjoy spending time here.

#4 Sweet

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Posted 26 January 2015 - 01:12 PM

Welcome to the forums! I'm sorry to hear of your diagnosis. It can all be so confusing and overwhelming at the beginning. So take one day at a time. 

 

Jo provided you with several excellent links, I do hope you find them helpful. 

You've come to the right place for accurate knowledge, support and friendship.

Again welcome!


Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 Shelley Ensz

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Posted 27 January 2015 - 07:49 PM

Hi Fitorfat,

 

Welcome to Sclero Forums!  I'm sorry you have morphea but I am very glad you found us.  I'm sure you'll be busy for awhile looking at all the info Jo provided.  Be sure to catch Amanda's videos, too!

 

Altogether, morphea is generally quite treatable now. It's always easier to prevent progression than to clear up any existing damage.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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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.