Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

(Update) Amanda: Diffuse Systemic Sclerosis


  • Please log in to reply
10 replies to this topic

#1 LisaBulman

LisaBulman

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,135 posts
  • Location:Massachusetts

Posted 23 November 2010 - 05:38 AM

(Update) Amanda: Diffuse Systemic Sclerosis Now I continue my scleroderma journey having collected myocardial fibrosis, heart failure and post capillary pulmonary hypertension to add to gastrointestinal issues, mobility issues, skin involvement, joint contractures, sclerodactyly, chronic pain and fatigue...

There are over 1,000 patient and caregiver storieson the main Sclero.org site. Over 300 of these stories are featured in the Voices of Sclerodermabook series. Submit your story here.
Lisa Bulman
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)

#2 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 23 November 2010 - 06:36 AM

Man, what a whiner! :lol:
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#3 LisaBulman

LisaBulman

    Platinum Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,135 posts
  • Location:Massachusetts

Posted 24 November 2010 - 05:37 AM

You're too funny! :VeryHappy:
Lisa Bulman
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)

#4 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 26 November 2010 - 06:19 AM

No Amanda...you're not a whiner...but you ARE a NUT! :emoticon-hug: (and a very loveable one at THAT)!
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#5 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,274 posts
  • Location:Minnesota

Posted 26 November 2010 - 07:30 AM

Amanda, darling, you have a lot more to whine about than most of us yet you still manage to do it in such a clever, often tongue-in-cheek, charming manner. But remember, you DO have something to whine about, whether you chose to exercise that option or not on any given day.

Don't you think we should all get an award, every single day, just for getting out of bed (if indeed, we do) and for doing anything else besides that (if indeed, we do)?!

Here's an award for you, Amanda, and for all our fellow Sclerodermians. It's engraved, "You truly wouldn't believe what it is I'm not whining about right now!" Sclero Award 2010.

:emoticon-hug:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

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

#6 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 27 November 2010 - 09:58 AM

You are SO RIGHT about "Our Amanda", Shelley... One very special lady indeed.

I also love the "Sclero Award 2010" for ALL Sclerodermians....Rock On Everyone :emoticons-yes: !
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#7 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 29 November 2010 - 10:21 AM

Awww...you guys!!:thank-you:

The Sclero 2010 award for perseverance, determination, ingenuity, humour and courage goes to...every sclerodermian everywhere! :flowers:
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#8 miocean

miocean

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 30 November 2010 - 01:07 PM

:emoticon-bang-head: I am such an idiot!

I jUST realized that the Amanda in the link was "our" Amanda and when I first read this post I couldn't believe the moderators would allow someone to post "what a whiner!!!" :emoticon-bang-head:

miocean
ISN Artist

#9 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 30 November 2010 - 02:58 PM

Oh OUCH, miocean! Please don't say that because you are NOT! You are "OUR miocean" and we have lots of {{{ :emoticon-hug: }}} for you and you are never going to change our minds about how very special you are to us, either!
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#10 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 01 December 2010 - 02:04 AM

Amanda, having read your story throughly, I can only say that it makes me feel humble at the amount of courage you have shown. :flowers:

May I hope to bear everything that comes my way with the same amount of fortitude! :)

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#11 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 01 December 2010 - 07:59 AM

Miocean you are hilarious!:lol: No one does humour like a sclerodermian! :lol:

Jo fortitude comes with scleroderma, it's a package deal, we all have it in abundance!
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)