As, at this time, my symptoms were out of control, attacking my body with a vengeance.
Every day, I remain in a state of awe that I have defied my diagnosing doctor’s expectations.
In particular, the superhuman beings, Dame Prof Carol Black and Prof Chris Denton. I attended here, December 1998, having been first diagnosed in September 1997.
The only medication which I take is bosentan 125mg twice a day, in an attempt to reduce my digital ulcers. I have seen a marked improvement in my hands since taking this medication.
I was honoured to be a member of the medical team who devised the NHS England Guidelines for treating digital ulcers in scleroderma, published in 2015.
As well as, all patients have included their current reality in relation to treatment and management.
Most patients take a cocktail of numerous cytotoxic medications, and have to attend so many medical appointments, it is their full time job.
So, in essence, the higher the level of the biomarker, the more aggressive / active the disease.
Further studies are required to confirm this understanding more, as well as, to identify all bio markers involved.
This paper includes all of the current differing approaches being investigated, in trying to understand the immune response involved in the scleroderma process.
Access to this paper is currently free, Click here
This bi-annual event is the hub of the most up to date understanding of the entire scleroderma disease process.
However, due to the multi complex body systems involved in the disease process, research still falls way behind with providing an understanding as to the cause.
An edited version of this article was published here, in my Column with Scleroderma News.
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