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!
Thanks to Shelley's generosity I can now invite people in the UK to join me on the UK Scleroderma Forum! Come along and spend time with people facing the same challenges and triumphs as you!
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.
I love it around here as you can see, because in March 2012, I also became an ISN Sclero Forums Blogger!
In August 2015, I retired as ISN Email Support Specialist, after six years in that role. I really enjoyed doing this, after all, it was how I started here, but I need to simplify my life a bit right now.
In September 2015, I retired as ISN Sclero Forums Assistant Manager. I was also promoted from Support Specialist to ISN Sclero Forums Senior Support Specialist. I really enjoy the flexibility of volunteering with the ISN, since my responsibilities can expand and contract to suit my energies and interests at any given time.
My email address is [email protected].
Amanda Thorpe has produced another video, entitled Diagnosis of Pulmonary Hypertension in Systemic Sclerosis (Scleroderma). Did you know that diagnosing pulmonary hypertension in systemic scleroderma, especially in the early stages, can be difficult? Posted 10/12/2014.
Amanda: Diffuse Scleroderma Systemic Sclerosis I am thirty-nine years old and was diagnosed with diffuse scleroderma systemic sclerosis in August 2007…
ISN's Scleroderma Videos Series lists the complete collection of videos presented 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 01/09/2013.
Amanda Thorpe has also become a 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 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 11/28/2011.
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.
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 Sclero U.K. and an ISN Email Support Specialist. (Also see Amanda Thorpe , Sclero Forums, U.K. Forum, and How to Volunteer) Posted 03-19-10.
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.
SCLERO.ORG is the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses. We are a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team. Donations may also be mailed to: