Amanda Thorpe |
ISN Video Presentations Manager
ISN Liaison to the SSUK
ISN Sclero Forums Assistant Manager
ISN Video Presenter
ISN Email Support Specialist
ISN Sclero Forums Blogger |
| 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 developed myocardial fibrosis which led to serious heart failure, but thanks to a biventricular ICD the heart failure has improved. 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 a volunteer. 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.
Since the launch of the Scleroderma Society UK Sclero Forums subforum I have resigned as an advice line volunteer, as webmaster and trustee of the Scleroderma Society. I'm still the ISN Sclero Forums Support Specialist for Scleroderma Society UK but in addition I'm now the ISN Liaison for the Scleroderma Society UK.
I love it around here as you can see, because in March 2012, I also became an ISN Sclero Forums Blogger!
My email address is amanda-thorpe@sclero.org. |
Related Links |
| Amanda's Personal Story |
| Amanda: Diffuse Scleroderma Systemic Sclerosis I am thirty-nine years old and was diagnosed with diffuse scleroderma systemic sclerosis in August 2007... |
| ISN Scleroderma Video Series |
| ISN's Scleroderma Videos Series lists the complete collection of videos presented by Amanda Thorpe. |
| ISN Video: Overview of Localized Scleroderma by Amanda Thorpe |
| Amanda Thorpe has produced another video, entitled Overview of Localized Scleroderma. Linear and morphea scleroderma affect the skin and sometimes the underlying muscles and bones, but do not reduce a person's life expectancy. (Also see: Scleroderma Videos). Posted 01/09/13. |
| Amanda Thorpe: ISN Sclero Forums Blogger |
| Amanda Thorpe has also become an ISN Sclero Forums Blogger! I love it around here as you can see, because in March 2012, I also became a blogger! (Also see: Amanda Thorpe and How to Volunteer) Posted 03/16/12. |
| Amanda Thorpe: ISN Video Presentations Manager |
| Amanda Thorpe has also become the ISN Video Presentations Manager. In this role that she created, she will be managing the overall production efforts for a series of educational videos on scleroderma and related topics, such as pulmonary hypertention. (Also see: Amanda Thorpe and How to Volunteer) Posted 11/28/11. |
| Amanda Thorpe: ISN Liaison to the SSUK |
| Amanda Thorpe has also become an ISN Liaison to the Scleroderma Society of the U.K. (SSUK). In this role she will be coordinating SSUK events and news so that it is publicized on Sclero Forums SSUK subforum. (Also see: Amanda Thorpe , Sclero Forums, U.K. Forum, and How to Volunteer) Posted 10/04/11. |
| Amanda Thorpe: ISN Video Presenter |
| Amanda Thorpe has also become an ISN Video Presenter. Her first video, Scleroderma Heart Involvement, gives a brief overview of heart involvement in systemic sclerosis. (Also see: Amanda Thorpe , Sclero Forums, U.K. Forum, and How to Volunteer) Posted 09-05-11. |
| 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 volunteer 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. 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. |
