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11 replies to this topic

#1 chockers

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Posted 23 May 2009 - 04:57 AM

Hi Anyone here from Norfolk ?

christine :)

#2 sfodreamer

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Posted 25 May 2009 - 08:11 AM

Hello, I'm from Norfolk UK. Which part are you from?



#3 Amanda Thorpe

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Posted 25 May 2009 - 09:46 AM

Hello Sfodreamer

Welcome to the forum! You have a very cryptic name indeed.

I'm glad Chockers has had your reply, wouldn't it be funny if you two were only a few minutes away? When first diagnosed I felt like I was the only one, it never occured to me that there was another person with scleroderma only 20 minutes away! I'm pleased to say we have since met and got on exceeding well.

Out of curiosity are you a member of the Scleroderma Society U.K.?

Look forward to hearing more from you.

Take care.
Amanda Thorpe
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#4 Amanda Thorpe

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Posted 25 May 2009 - 09:50 AM

Hello Chockers

I forgot to ask, are you a Scleroderma Society U.K. member?
Amanda Thorpe
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#5 sfodreamer

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Posted 26 May 2009 - 03:39 AM

Hello not really a cryptic name but a favourite place, San Francisco which I am constantly dreaming about after having a few holidays there.

My name is Wendy, and I have had a form of Scleroderma for about four years. When I first became ill no one had a clue what was wrong and it took about 2 years to get a diagnosis.

#6 Amanda Thorpe

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Posted 26 May 2009 - 05:23 AM

Hello Wendy

San Franciso dreamer eh? I spent 10 years in America but never got to San Francisco.

Which form of scleroderma do you have, I have diffuse systemic sclerosis and I suspect a morphea overlap but will confirm this when I next see my rheumatologist.

Unfortunately diagnosis can take a long time, an average of 6 years for women with scleroderma and 3 for men. Have a look at our Difficult Diagnosis page for some background information as to why this is.

My diagnosis journey wasn't that long, all things considered. Including two initial incorrect diagnoses it was only about a year. Were you wrongly diagnosed or just dismissed on your way to a correct diagnosis?  It's only down to sheer determination that some of us ever achieved a diagnosis!

Take care and I look forward to hearing more from you.


Amanda Thorpe
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#7 chockers

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Posted 29 May 2009 - 11:35 AM

hi Amanda yes I was but I have forgotton to send the renewal form in .Next time ill do it for 4 years Christine /chockers

#8 chockers

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Posted 29 May 2009 - 11:36 AM

Hello
i am from West NORFOLK and go too the Kings Lynn hospital
love chockers

#9 chuckleberry

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Posted 19 June 2009 - 04:05 AM

Hello sfodreamer and Christine.I'm a newy and also live in Norfolk,Norwich to be precise and am being treated at the N&N.
It would be good to hear from both of you
Penny

#10 Deb1million

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Posted 19 June 2009 - 09:16 AM

Hello Wendy, Christine and Penny

Its great that you are all relatively close in Norfolk. I'm just south of you all, in north Essex. I often visit family in north Suffolk, so if you are ever planning a get-together, it would be good to meet.

Amanda arranges a south east (Essex) meeting, and Im really looking forward to meeting her and other members. I felt so alone when first diagnosed, and now I find so many people with sclero nearby.

Hope you are all keeping well.

Debs

#11 Amanda Thorpe

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Posted 19 June 2009 - 10:33 AM

Hello Penny

Welcome to this forum! I'm glad you're near some of the others who post, the sclero world is actually quite small.

When I was first diagnosed I thought I was the only one, little did I know we're everywhere including just down the road from where I live! Because it's a rare disorder you automatically feel isolated when diagnosed but fear not we are all over the place.

Look forward to hearing more from you and take care.
Amanda Thorpe
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#12 chockers

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Posted 24 July 2009 - 09:33 AM

Hi WE COULD ALL MEET UP SOMEWHERE CHRISTINE