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What do you do if there is no sclero specialist in your state?


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8 replies to this topic

#1 FloM

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Posted 13 May 2011 - 07:58 AM

Hey Everyone

I was reading a few posts and it has been highly recommended to see a scleroderma specialist. Looking through the list there doesn't seem to be one located in Western Australia. Has anyone got any suggestions? I am seeing a rheumatologist at the moment. Oh and how paranoid do I need to be with the cold? Apart from Raynaud's are there any other 'nasties' the cold can bring on? :emoticon-dont-know:

Cheers Fil

#2 Shelley Ensz

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Posted 13 May 2011 - 08:14 AM

Hi Fil,

Welcome to Sclero Forums! I'm sure Robyn or others will be able to answer your questions regarding scleroderma specialists (which, to explain to other readers, are all rheumatologists with special interest in scleroderma).

I find it is helpful to be well-prepared for Raynaud's and to take many reasonable measures to stay warm at all times. Some of us are more sensitive to temperature changes than others, and sometimes our sensitivity changes (for better or worse.) It is best for us to do whatever it takes to prevent attacks from occurring in the first place. See our Raynaud's Prevention page for many tips and tricks.

Here are some warm welcoming hugs for you.

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Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#3 Amanda Thorpe

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Posted 13 May 2011 - 11:20 AM

Hello Fil

Prevention is best with Raynaud's so have a look at Shelley's link, hopefully Robyn will be able to help with the local scleroderma experts for you.

Take care and keep posting.
Amanda Thorpe
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#4 Robyn Sims

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Posted 14 May 2011 - 06:07 AM

Hi Fil,

It seems quite a coincidence but today I flew into Perth to man a both at the Dertmatology Conference on behalf of Scleroderma Australia.

I will be here for five days, so would be happy to touch base with you Fil.

Each State in Australia, including WA, have a Scleroderma Clinic which is run by the Australian Scleroderma Interest Group. A link to this group of dedicated doctors is on this site. ASIG is the anacronim.

Of course we cannot recommend specific people but there are great people in Perth who can help. On Tuesday I am heading to Mandurah to a support group of about 12 members, which I am looking forward to.

I will check my computer each day to see if you have posted.

:emoticons-group-hug:

#5 FloM

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Posted 14 May 2011 - 09:57 AM

WOW!
I'd love to touch base. I live in the Mandurah area too. I work full time so will you be having your meeting after hours? Coincidence indeed! I look forward to hearing your reply. :great:

Cheers Fil

#6 Robyn Sims

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Posted 14 May 2011 - 05:39 PM

Great Fil,

I know they are meeting on Tuesday so when I find out today I will let you know the time and place.

Looking forward to meeting and sharing with you.

The leader of the support group there is Wendy.

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#7 Robyn Sims

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Posted 15 May 2011 - 04:45 AM

Hi again Flo,

I met with the co-ordinator of the Mandurah Support Group today at the Dermatology Conference.

I will be meeting her at the Eastlake Church, opposite Peel Hospital at 11 a.m. on Tuesday the 17th. We are really looking forward to meeting up with you. Will have lots of information for you.

:emoticons-group-hug:

#8 FloM

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Posted 15 May 2011 - 08:51 AM

Hi Robyn

I will have to duck out from work. I'm sure I won't have any troubles (cross fingers) I'm so looking forward to getting as much info as possible and meeting everyone too. I'm bound to know someone, Mandurah isn't that big.

See you Tuesday, Fil :VeryHappy:

#9 FloM

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Posted 19 May 2011 - 08:32 AM

Hi Robyn

I just wanted to say thank you so much for connecting me with the sclero support group. It was a pleasure meeting with you, Wendy and the rest of the group. The info I was given has very much appreciated. It's comforting to know these guys aren't that far away if I need anything. Once again it was a pleasure to meet you and thank you for all the work and support you offer. :thank-you:

Cio for now Fil