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!
My email address is firstname.lastname@example.org.