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Scleroderma Specialists? Any recommendations?

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3 replies to this topic

#1 mopsygirl


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Posted 17 December 2010 - 09:10 AM

Hi all.

I just got back from my first appointment with the Rheumatologist. As I expected, she really didn't know much about En Coup De Sabre... but was familiar enough to make a preliminary diagnosis based on the line down my forehead and the bald patch of hair at the top of my scalp. My mom went with me, and I'm so glad she did because I probably would not have been strong enough to handle it own my own. The next step is to find a Rheumatologist that specializes in this disease... Any physicians to recommend? I don't care about the distance, as long as it is in the United States.

Thank you in advance!

#2 Sweet


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Posted 17 December 2010 - 10:11 AM

Hi Kelsie,

Here's a list for Scleroderma Experts. Hope this helps!
Warm and gentle hugs,

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#3 Joelf


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Posted 17 December 2010 - 07:55 PM

Hi Kelsie

It's a very good idea to consult a Scleroderma specialist as sadly a lot of rheumatologists really don't have the expert knowledge to enable them to fully understand this complex disease.

I'm glad you were able to take your mother with you for your appointment; it's always better to have support and also another pair of ears with you. I pressganged persuaded my best friend to come with me for my initial local consultant's appointment and thereafter my long suffering husband accompanied me for each hospital visit until I started on my treatment. I think that often we're in a state of shock after the diagnosis and it does help to have someone with you.

I hope you find a good Sclero expert from the list that Sweet has given you. :)
Jo Frowde
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#4 Amanda Thorpe

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Posted 18 December 2010 - 06:32 AM

Hello Kelsie

Yep I echo Jo, seeing a scleroderma expert is a very good idea.Do let us know how you get on.

Take care and keep posting.
Amanda Thorpe
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