Why raise awareness?
This is our opportunity to spotlight the entire scleroderma and Raynaud’s experience in all of its forms.
Having a rare disease forces you to become your own patient advocate.
As well as, it forces you to become your own medical expert in your diagnosis, along with, its optimum treatment and best management. Expert specialist centres are crucial to implement this.
For 2017, I focussed my awareness month campaign on patient profiles and research across the globe.
Expert Specialist Centres
Access to innovative medicines
The global patient profiles highlighted several current unmet clinical needs, showing that, although no two patients display the exact same set of symptoms, some similarities can be made.
My fingers and eyes are still protesting at the increase in computer / keyboard use over the course of the month, with several new lumps of calcium appearing at the tips, due to excessive use. Living the dream indeed!
|calcium on the pressure pad of my little finger|
Again, our friends over in Canada, showed the rest of the world how to raise awareness of scleroderma. Huge thanks to them, for all that they do, and continue to do:
My 2016 Scleroderma Awareness Month campaign, focussed in more detail on the symptoms and body parts affected, with a flashback to my 2016 awareness, global efforts.
Each day brings along a variety of different symptoms which have to be respected and prioritised, in the hope to have the best day possible, given the diagnostic reality.
On some days, this means spending the day in bed.
Overall, an improvement in the medical understanding as to the nature of the disease and its implications, has improved immensely, over the course of the last decade.
However, due to the multi complex body systems involved in the scleroderma, autoimmune disease process, research still falls way behind with providing an understanding as to the cause, and effective treatments, leading to a cure.
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
The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, 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