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Biomarker for Diffuse Scleroderma skin has been discovered!


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New Member - Morphea


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#1 TeresaW

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Posted 22 October 2009 - 04:33 AM

Hello everyone. New member here.

I was diagnosed with Morphea by a dermatologist about 4 years ago at age 35. I initally had a baseball sized area on my back and the doctor simply said "It's Morphea and there is no treatment or cure". Told me if it ever spread to my face to come back in. Well, over the years it has spread all over my torso, front and back and is starting it's way up my chest. I also noticed the other day that is creeping up the back of my neck. I also have patches on the insides of both elbows; no where else on my arms just the elbows. The areas on my arms are the most troublesome as far as being uncomforatble goes, but my back does get ridiculously itchy.

I live in central New Jersey and would like to see a Rheumatologist. There are plenty in my area but I really don't want to waste my time with someone who isn't familiar and will just refer me to another doctor. Does anyone have any referrals for doctors in NJ? I just want to meet with a doctor who can confirm that it's all just morphea and not something else.

Thanks everybody!

#2 Jeannie McClelland

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Posted 22 October 2009 - 05:21 AM

Hi Teresa,

You are in a good area for finding a scleroderma specialist. Here's a link to our page on the Scleroderma Clinical Trials Consortium (SCTC), which is a listing, by state of scleroderma specialists. In central New Jersey you could pretty easily also get to the neighboring states.

Welcome to the Forum, by the way! I'm glad you joined.

Warm hugs,
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#3 kellyA

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Posted 22 October 2009 - 06:03 AM

Hello,

I live in Central Jersey also (mercer county to be exact) I go to Philadelphia Thomas Jefferson University (I have systemic Scleroderma) my friend also has sclero and goes to Univ of Penn. either one of these are fine, send me a private message and I can give you names.

#4 Amanda Thorpe

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Posted 24 October 2009 - 07:52 AM

Hello Teresa

Welcome to the forum! Now you can arrange to be seen by a scleroderma expert and get the right treatment, yes treatment because contrary to what you were initially told morphea can be treated although not cured. There are definetly things to help with the itch.

Please keep us informed about how you get on and take care.
Amanda Thorpe
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#5 debonair susie

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Posted 24 October 2009 - 09:02 AM

Hi Teresa,

I welcome you to the forum, where "Our Family" is here, not only to acquire information relative to their particular illness/disease, but also, to support other others who so need it.

We are folks who strive toward becoming our own advocates, because knowledge is power :emoticons-yes:

I wish you the best in getting lined up with a rheumatologist who can best suit your health needs.
Special Hugs,

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#6 TeresaW

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Posted 26 October 2009 - 05:50 AM

KellyA

I just sent you an e-mail.

Look forward to hearing back from you.

#7 TeresaW

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Posted 30 October 2009 - 03:24 AM

Well I scheduled an appointment with a local sclero specialist, but wow.......it's not till the end of February! Wish I had thought of this sooner. Oh well, at least I'm on my way to getting some answers and advice from an expert. :)

#8 debonair susie

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Posted 31 October 2009 - 05:55 AM

Teresa, you might call back to the dr's office and ask if there happens to be a cancellation... you might be put in that slot.
Special Hugs,

Susie Kraft
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