Amanda Thorpe

ISN Sclero Forums Assistant Manager
ISN Sclero Forums Support Specialist for Scleroderma Society U.K.
ISN Email Support Specialist

So much to do, but not enough time!

Scleroderma greetings! I'm Amanda Thorpe and have diffuse cutaneous systemic sclerosis which retired me early at 40. I am disabled due to major skin/joint involvement, have gastrointestinal issues and early sclero induced changes to my heart. I have a wonderful husband and we have laughed and cried our way through this disease so far and intend to keep doing so!

I joined the Scleroderma Society U.K. and began posting on ISN as Ohboyoklahoma around 18 months ago. I've increased my involvement with the Scleroderma Society by becoming an advice line volunteer, trustee and webmaster of the website. I became webmaster because I wanted to create a U.K. site as vibrant, informative and user friendly as ISN's. Thankfully Shelley Ensz invited the Scleroderma Society U.K. to become an ISN affiliate so I'm now also the ISN Sclero Forums Support Specialist for the Scleroderma Society U.K. Visit our U.K. Forum!

Having scleroderma allows me the privilege of interacting with amazing people. I have always believed that there's life, good life to be had after scleroderma, it's just that life looks nothing like you thought it would but that's not necessarily a bad thing. I want others to believe this, to have access to safe, relevant information about their disease and to be able to interact with others about or with scleroderma.

In October 2009, I expanded my involvement by volunteering as an ISN Email Support Specialist, as well. In this role, I am responsible for answering most of the private emails submitted to the main site (in English). I'm lovin' the weird 'n' wacky world of sclero.org and I am particularly looking forward to helping people who are newly diagnosed, as I remember clearly what it was like to reach out for help myself when newly diagnosed.

In March 2010, I accepted the challenge to become an ISN Sclero Forums Assistant Manager, where I will be helping with some of the technical and management aspects that help keep Sclero Forums such an outstanding global resource for information and support.

My email address is amanda-thorpe@sclero.org.

Related Links

Amanda: Diffuse Scleroderma Systemic Sclerosis I am thirty-nine years old and was diagnosed with diffuse scleroderma systemic sclerosis in August 2007...

Amanda Thorpe: ISN Sclero Forums Assistant Manager

The nonprofit International Scleroderma Network thanks Amanda Thorpe for taking on an additional volunteer role, as an ISN Sclero Forums Assistant Manager. Amanda is also ISN Sclero Forums Support Specialist for Scleroderma Society U.K. and an ISN Email Support Specialist. She is also a trustee and webmaster for the Scleroderma Society U.K., which is an affiliate of the ISN. (Also see: Amanda Thorpe , Sclero Forums, U.K. Forum, and How to Volunteer) Posted 03-19-10.

Amanda Thorpe: ISN Email Support Specialist

Amanda Thorpe: ISN Email Support Specialist. In October 2009, I expanded my involvement by also volunteering as an ISN Email Support Specialist. In this role, I am responsible for answering most of the private emails submitted to the main site (in English). I'm lovin' the weird 'n' wacky world of sclero.org and I am particularly looking forward to helping people who are newly diagnosed. Posted 10-19-09.

Welcome to Amanda Thorpe: ISN Sclero Forums Support Specialist for Scleroderma Society U.K.

Amanda Thorpe: ISN Sclero Forums Support Specialist for Scleroderma Society U.K. I joined the Scleroderma Society U.K. and began posting on ISN as Ohboyoklahoma around 18 months ago. I've increased my involvement with the Scleroderma Society by becoming an advice line volunteer, trustee and webmaster of the website. I became webmaster because I wanted to create a U.K. site as vibrant, informative and user friendly as ISN's. Thankfully Shelley Ensz invited the Scleroderma Society U.K. to become an ISN affiliate so I'm now also the ISN Sclero Forums Support Specialist for the Scleroderma Society U.K., which will be launched shortly. Posted 05-12-09.