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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 Nannato11

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Posted 16 May 2007 - 12:13 AM

Hi Everyone,
I'm not sure if I'm in the right place or not. I have many autoimmune disorders and recently diagnosed with CREST syndrome. The articles I've read say that you may only have two of the five diagnosis with CREST. I for sure have the esophogus part and I am seeing changes in my skin, especially in my hands.
I have sjogrens syndrome and everything that goes along with that. So many think that it is only dry eyes, mouth, & skin. It is so much more than that. I am also a diabetic, have fibromyalgia, degenerative arthritis, and the list goes on.
I'm seeing my rhuematologist next month. It was my GI Dr. who diagnosed me with CREST. I have shiny bumps on my toes. And my right hand is becoming wrinkled and really strange looking.
I am just wondering if I am in the correct forum. I am active with the sjogrens syndrome site where there has been a lot of help.
I have been reading this site most of the night. Its been so helpful. Just to know that we're not alone in all of this.
I'm so glad to be here.
Thank You,
Nanna

#2 relicmom1

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Posted 16 May 2007 - 01:36 AM

Welcome Nanna!!! I am glad you found us. I am sorry you have so many things going on at once. You will find that most of us here are in the same boat :) . You will also find this group of people to be very caring, compassionate and supportive. There is a wealth of very good information here as well. You will find that most of us had a strange trip on the way to our diagnosis. For some it took longer than others. I was originally diagnosis with rheumatoid arthritis, then to lupus and now with CREST (with all the requirements) I also have many other things going on directly related to the scleroderma.
Just remember ...this is a great site and we are all here if you need us for anything!! :)
Peace :)
Barbara aka relicmom1

#3 janey

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Posted 16 May 2007 - 03:40 AM

Nanna,
Yes you are in the right place. CREST is a form of systemic scleroderma and this is the scleroderma forum. We have several forum members with CREST so I'm sure you'll hear from many of them. We also have a page dedicated to CREST so you will probably find some good stuff there as well.

I'm sorry you are dealing with so many diseases at the same time. Unfortunately, that does seem to be the nature of the beast - when you get one, you are so susceptible to getting another. You probably have done tons of research on Sjogren's, but you might find something new on our Sjogren's Syndrome page. Many of our members have that as well.

So welcome Nanna! I'm glad that you have joined us and hope you post often. Ask questions, share information, whatever you feel like. It's a great group.

Big Hugs,


Janey Willis
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International Scleroderma Network (ISN)

#4 WestCoast1

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Posted 16 May 2007 - 04:31 AM

Nanna,
Welcome to the scleroderma forum. I am sorry to hear that you suffer from so many autoimmune issues. This is a great place to ask questions and the ISN has many helpful articles. Janey sent you a great link for CREST information.

Its seems that you found the right forum. I am glad to hear that you are seeing a rheumatologist for your Sjogren's, and for the CREST.

I am glad that you joined us!
*WestCoast*

********

#5 Sweet

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Posted 16 May 2007 - 06:26 AM

Hi Nanna,

You bet you are in the right forum and we welcome you with open arms!! I'm really sorry you are dealing with so very much. We are here to support you in anyway we can. I see that Janey has already provided you with several helpful links.

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

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#6 Sheryl

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Posted 16 May 2007 - 12:57 PM

Nanna,
You should love our happy thriving group. Welcome! I also have sestemic sclerosis / crest. I can't believe we now have well over 15hundred members. This is awesome. Welcome to all the newest members that have joined this month. Also to our newest administrators. We have a great team of really hard workers. Ask anything you want and someone will have experienced it or have a place to send you to get the information that you need. We all get moral support and get our spirits lifted from others in the group if we have a down peroid. This group is the best. Sheryl
Strength and Warmth,
Sheryl

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#7 jefa

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Posted 16 May 2007 - 07:10 PM

Let me add my welcome, Nanna. Like you, I spent nearly all night reading on this site when I found it (this was on the old forum) and couldn't believe how much information was shared among the members. Good luck with your rheumatology appointment next month and keep us informed of the outcome.
Warm wishes,
Jefa

Carrie Maddoux
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International Scleroderma Network (ISN)

#8 Nannato11

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Posted 16 May 2007 - 08:06 PM

A BIG THANK-YOU for welcoming me to this site. Its always nice to know you're not alone in this battle.
I have already learned so much and again thank-you.
I'm sure you will read posts from me often. I love to read and research. And I will keep you posted as to what my rhuematologist has to say next month.
Does anyone have problems with the hot weather? I can hear all the YES'S!!!!!!!
I have learned to take all of this one day at a time. And on some days I take it one hour at a time. But I find the best medicine is laughter. I try and find at least one thing a day thats funny and usually there are way more than one.
Thank you all, I already feel I have new friends.
Nanna

#9 LisaBulman

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Posted 17 May 2007 - 01:34 AM

Hi Nanna,
Just thought I'd welcome you to the forums along with everyone else! You are definately in the right place. I can see that Janey has provided you with a few links to our Sclero A-Z website. Hopefully you will find the information helpful.

As you can see we are a friendly group always willing to lend support and give information when we can.

Welcome again!

Hugs,
Lisa
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International Scleroderma Network (ISN)

#10 Patty

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Posted 17 May 2007 - 03:03 AM

Hello Nanna!!

Sorry that you got the diagnosis of CREST but you have come to the right place for support. I know how much the love and caring I have found here has helped me through some days that I wanted to throw my hands up in the air and give up. The wealth of information here is wonderful. Just wait long enough and someone will come along with some great answers.

Hugs,
Patty
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.