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Do you live in Devon, Dorset or on the Somerset border?


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#1 Amanda Thorpe

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Posted 27 July 2010 - 03:46 AM

Hello All

New members Jane German would like to set up a Scleroderma Society UK local group covering Devon, Dorset and the Somerset border. Jane says "I live on the Devon, Dorset, Somerset Border and would happily set up a group in this area if there is anyone nearby who feels they would like to attend. I am feeling rather alone in Devon - visits to hospitals and doctors have given me a kind of 'celebrity' status and no one really knows how to deal with me. I am on a very steep learning curve, both my husband and I would love to meet others in a similar situation. My husband has been incredibly supportive from the very beginning, I am sure it would do him good to meet other partners too. Would love to hear from you - is there any one out there?"

If you're interested please send Jane a private message for more details.

Take care.
Amanda Thorpe
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#2 christopher

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Posted 02 August 2010 - 11:01 AM

Hi I live in Plymouth in Devon and would love to meet up with others in the area. I'm back to the Hospital tomorrow for another visit.

Chris

#3 Amanda Thorpe

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Posted 03 August 2010 - 06:49 AM

Hello Chris

For more information about meeting up with others, which Jane would like to arrange, you can send her a private message.

Do let us know how your hospital visit goes!

Take care.
Amanda Thorpe
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#4 christopher

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Posted 03 August 2010 - 10:00 AM

Hi Amanda thanks for the reply visit went ok still waiting for my Neurology appointment but have to go back and see my dermo consultant again tommorrow for more tests and some more bloods to be tested

He also is arranging a biopsy to be done.My dermo consultant is unsure of treatment until I have seen the Neurology Consultant as I am in pain in my upper body most of the time(back,stomach and my sides).

I will let you know how tomorrow goes.

How are you getting on?

Chris xx

#5 Amanda Thorpe

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Posted 04 August 2010 - 08:55 AM

Hello Chris

Well having gone my first 2 years without any internal involvement other than gastrointestinal I decided to go for it big time and get diagnosed with myocardial fibrosis and class 3 limited heart failure. Well if you're going to do it you may as well do it in style I guess! Awaiting a biventricular pacemaker and implantable cardioverter-defibrillator and looking forward to feeling better once they're in. Hmmm I wonder what next...! :lol:
Amanda Thorpe
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(Retired) ISN Sclero Forums Assistant Manager

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International Scleroderma Network (ISN)

#6 christopher

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Posted 06 August 2010 - 05:58 AM

Hi Amanda,

Well, you don't do things by half do you!

I went back into hospital on Wednesday and had a whole host of blood and microbiology tests just got to wait for the results now. I'm back to see my dermatologist consultant in another month.

chris