Living the dream- Raynaud's Style, Nicola Whitehill.
Sunday, 1st October, saw the start of #RaynaudsAwarenessMonth 2017.
As well as, patients who have worked in an industrial environment, for example, vibration white finger, and a patient whose body has been subjected to intense hypothermic conditions, for example, military operational personnel.
My symptoms are easier to manage by avoiding any temperature change.
Should I have to go out, I must wear the appropriate clothing.
My inner ‘Bond Girl’ absconded years ago, with me being forced to wear Ugg boots and clothes even in the summer.
|Hottest day of 2013, I have to wear Ugg boots and gloves.|
|sunny autumn day 2016|
I still remain in the ‘fragile zone’.
A huge thank you to Deani.
As well as, continue to impress Prof Denton with my symptom reversal after 20 years, from first having heard those life changing words ‘You have scleroderma and Raynaud’s’.
This enabled me to have my photo taken for a second, with me wearing just my t shirt, without me ‘losing’ my blood circulation to my hands or feet, outside of the main front entrance, to this global expert specialist centre.
|30.11.16 - Eskimo outfit|
For my best Raynaud’s symptom management, I have found that 'prevention is better than cure'.
The only medication which I take is Bosentan 125mg twice a day, which has reduced my digital ulcer frequency.
Dr Howell is a world expert on Raynaud’s and every patient who visits the Unit will be familiar with his horrendous bucket of ice cold water test, upon their initial visit.
Read more, here.
To view the UK treatment guidelines for Raynaud’s Phenomenon, Click here
All of your monies will be used for medical research purposes only, lead being, the world trail blazer Dr Kevin Howell.
|Dr Howell and I, Sept 2017|
Facebook Page: Raynauds Unit Royal Free Hospital
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