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#1 Lulu


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Posted 19 March 2010 - 08:34 AM

Hi all! I'm new to the board and recently diagnosed with Crest.

It came as a huge shock since they initially thought it was lupus. To be honest until 2 weeks ago I had never even heard of scleroderrma.

#2 Jeannie McClelland

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Posted 19 March 2010 - 09:41 AM

Hi Lulu,

Welcome to the Forum!

You aren't alone in not having heard of scleroderma until your diagnosis. Get used to having to tell everybody (including medical folks) what it is! laugh.gif

Have you got any questions we can help you with? If you've got too many to list, just start with one and work your way through them. Our main ISN scleroderma pages have an enormous amount of information and we post new articles weekly in the Newsroom. When I was first diagnosed, I'd look things up and then come back here to the Forum and read what other members had to say on the issue for a reality check. As a group we have a vast amount of experience.

Best Wishes,

Jeannie McClelland
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#3 Amanda Thorpe

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Posted 19 March 2010 - 10:25 AM

Hello Lulu

Welcome to the forum! Actually I think not knowing about scleroderma prior to diagnosis can be a bonus. Two weeks before I was diagnosed I saw a film about a woman with sclerodemra and she comes to a sticky end...when the rheumatologist said the word scleroderma I of course thought I was a gonner! Not yet!

Have a look around the forum and keep posting!
Amanda Thorpe
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#4 Joelf


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Posted 20 March 2010 - 03:18 AM

Hi Lulu,

Welcome to this helpful and informative forum. :bye:

I have  Limited Systemic Sclero and like you had never heard of it prior to my diagnosis. At the beginning when I first had the symptoms of a dry cough and breathlessness I very foolishly googled 'Pulmonary Fibrosis'......big mistake!! I scared myself witless!! :rolleyes: It was actually a relief to get the diagnosis of Scleroderma as it explained why a fit and lifelong non-smoker like myself should get a problem with their lungs. cool.gif

However once it was explained to me I found I could accept it far more easily; it's a fear of the unknown and being out of control that really gets to me. wink.gif

I look forward to reading more of your posts. smile.gif

Jo Frowde
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#5 debonair susie

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Posted 20 March 2010 - 08:51 AM

Hi Lulu,

I'm so pleased to meet you and to welcome you here.

Add me to the list and to the feelings you have been experiencing.
However, you are in a better place than I, do to the fact that you
are HERE and have US as your "Sclero Family" to hold our arms around
you as you become your own advocate, via the wealth of knowledge caring
support and understanding you will find here!

In the meantime, make yourself at home and please remember...We are glad
you are here...and you will be too!

{{Soft Hugs}}
Special Hugs,

Susie Kraft
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International Scleroderma Network (ISN)

#6 Sweet


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Posted 20 March 2010 - 10:05 AM

Hi Lulu!!

Welcome, I'm so glad you've joined us. I'm sorry to hear about your diagnosis of CREST. I to have CREST. As things go along if you have an specific questions, just toss them out there, and we'll be here for you. :flowers:
Warm and gentle hugs,

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#7 Lulu


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Posted 20 March 2010 - 11:09 AM

Thanks for the warm welcome everyone!

I have a lot to learn and a lot of reading to do. My learning curve over the past two weeks has been incredible. I'm sure I'll have lots of questions as I go along. Now that I'm two weeks into my diagnosis, I'm not as freaked out as I was. Along with Crest I was diagnosed with Sjogren's. I'm tired a lot of the time, so I may not get to post as much as I'd like to.