1st June, saw the start of Scleroderma Awareness Month, with the 29th, being World Scleroderma Day.
'Medical Research and its importance', Click here
'Clinical Unmet Needs for the Raynaud's Scleroderma patient', Click here
As well as, how raising scleroderma awareness during June, can maximise the potential of the cause and cure of this rare disease being discovered, in our lifetime.
I contribute this to the excellent care which I received from having attended the Scleroderma Unit at the Royal Free Hospital, London, December 1998, and, I continue to attend.
I was also on the stem cell transplant waiting list.
Sadly, if you have followed my blog, you will know that my ‘tin man’ body due to the damage from scleroderma, combined with my extreme Raynaud’s sensitivity, makes being ‘under house arrest’, my optimum symptom management location, and the internet my lifeline.
Even though managing my symptoms, combined with the damage to my body caused by the scleroderma, makes for a full time job.
Any spare energy or time which I have, is dedicated to the scleroderma Raynaud’s cause.
I believe that it will, upon investment and global collaboration in research, not just for scleroderma but for the autoimmune diseases as a whole.
The Scleroderma Unit at the Royal Free Hospital is the UK national scleroderma clinical trials centre.
It is difficult to obtain clinically sound, scientific statistically significant data, with only a small population eligible to take part.
This is why global collaboration is crucial for the sharing of best practice for the scleroderma Raynaud’s patient.
I designed the questionnaire to highlight the global diagnostic approach, as well as, treatment for the global scleroderma Raynaud’s patient, and how their experience could be improved.
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
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