|Nicola Whitehill (diagnosed in 1997, aged 24) and the Dream Team|
I detail more of my 'tin-man' like symptoms here
In 2015 I presented ‘Systemic Sclerosis – the patient’s perspective’ at the annual British Society for Rheumatology conference. To view the presentation click here
Here is the link to the index over the course of the year
|Anne Horton Mawdsley, campaigner and fundraiser, born 31 May 1942; died 12 October 2014|
During the summer of 2013 my 'incognito' status came to a sudden end, by way of me sharing my 'tin-man' like symptoms.
Dr Larissa Kerecuk is the Rare Disease Lead at Birmingham Children’s Hospital.
|Nicola Whitehill, Ben Howlett MP|
I have taken part in several live Twitter sessions, using my cosmicfairy444 alter ego, which Ben and Rare Disease UK have hosted live.
March is Autoimmune Disease Awareness Month #ADAM
All in all, on a day to day level, every rare disease patient is co-erced in to a world where being their own advocate is not a choice, it is a necessity for survival.
|Nicola Whitehill 30.11.16 'My skin is cured from Scleroderma', Royal Free Hospital|
An edited version of this article was published by sclerodermanews.com