In this article I hope to provide a resume of the information shared so far, along with the current research situation in relation to treatment options and strategy for such.
Accompanied with, ‘You will be in a wheelchair by Christmas’, and ‘You are looking at a maximum of 15 months’.
I am forever grateful for the medical expertise of the superhuman scleroderma trailblazers, Prof Dame Carol Black and Prof Chris Denton, who stopped my disease progression, further to me gaining their medical opinion, in December 1998.
This is a most horrendous feeling, and one which, I struggle to articulate.
Albeit, I know that my scleroderma and Raynaud’s experience has been a breeze compared to that of some of my fellow patients.
Follow Raynauds Scleroderma Awareness Global Patients Facebook Page for latest updates
An edited version of this article was published here, in my Column with Scleroderma News. June 2017.
To read my articles:
Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here
March Autoimmune Disease Awareness Month 2018, Click here
Global patient video, Click here
Becoming a Patient Research Ambassador for the NIHR, Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
Expert Specialist Centres, Click here
World Scleroderma Day 29th June 2016, Click here
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here
2016 Rare Disease Day Patient Voice