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|
On the 27th September I had the pleasure of attending my monitoring check up appointment with my hero, world expert, Prof Chris Denton, at the Scleroderma Unit in London.
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.
All of your monies will be used for medical research purposes only, lead being, the world trail blazer Dr Kevin Howell.
Facebook Page: Raynauds Unit Royal Free Hospital
An edited version of this article was published here, in my Column with Scleroderma News.
Planning for the Future, Click here
Rare Disease Day 2020:
Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, here
Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt here
Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click here
Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click here
2017 Rare Disease Day Medical Research
2016 Rare Disease Day Patient Voice
provides the brightest light,
for the illumination of
the rare disease patients’ plight.
To read about medical research at the scleroderma unit, 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
2018 Scleroderma Awareness Raising and Medical Research, Click here
Unmet Medical Needs, Click here
Calcinosis Video, Click here
The scleroderma tooth fairy, Click here
Skin Cancer and scleroderma, Click here
|Prof Chris Denton and I, Sept 2017|
This year, 2020, I am celebrating 22 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.
|Chat Magazine May 2019|
|James Carver, myself, Prof Chris Denton|
I had the pleasure of being a presenter and part of the European co-hort who gave a presentation at the European Parliament, Brussels, in honour of World Scleroderma Day 2015.
I am immensely grateful to James Carver, former MEP, for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
Please DONATE to help fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.
Alternatively, to make a direct donation to fund medical research via the Royal Free Charity, Scleroderma Unit, Click here
100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You.