of Living with Scleroderma, Raynaud’s,
And then, within seconds, the reality hits in, of what those words actually mean and what will the future entail.
I have described my full time job with my symptom management previously.
I had not prepared myself for the emotional roller coaster which the campaign provoked within me, whilst being reminded of those, my, ‘initial years’, when compiling each patient’s daily reality.
If you would like to be included please visit the Facebook page and post your photo which can then be uploaded into the video.
|Wyatt the Warrior and his family|
|RIP Silvana 14/12/1965 - 22/7/2017|
Please DONATE to help fund medical research at The Scleroderma Unit, The Royal Free Hospital, London where 100% of all of your monies will be used for medical research purposes only. Thank You.
#RareDisease #Hope #Belief
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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
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