Scleroderma, Raynaud's, Autoimmune Rare Disease.
The seasonal festive holiday time is almost here.
My little dream team are getting in the festive spirit by wearing their Christmas jumpers.
As patients living with a chronic debilitating, autoimmune rare disease, we know all too well that, there is no holiday from our day to day reality.
Managing the numerous and complex symptoms makes for a full time job.
Recently, I celebrated my 20th year since first having dragged my 'tin man' body, to the Scleroderma Unit at The Royal Free Hospital in London, UK.
I am hugely grateful to Dame Prof Carol Black, Prof Chris Denton and the NHS, for keeping me alive.
At the time of my initial diagnosis in September 1997, I was told that I had a 15month prognosis, due to the aggressive attack, which the diffuse form of the disease, was having on my body.
|Graduation photo July 2001 |
I am now 14 years chemotherapy / immunosuppressant free.
I take Bosentan for my Raynaud’s and I control my GI symptoms with a strict Diet.
Over here in the northern hemisphere, the season of winter has arrived.
Winter really is my nemesis time of year. 'House arrest' is my only option, in an attempt to minimise my Raynaud's flares. Prevention is better than cure. Infact, prevention is crucial, since there is no cure. Video.
However, I know that for my fellow patients, Margie, living in the southern hemisphere, this is their favorite time of year! Sadly, RIP my lovely friend Silvana.
By the time winter sets in, I am constantly cold.
This is accompanied with continual, relentless exhaustion, lethargy, and pain, causing immense frustration.
However to look at me, people kindly tell me, "you look so well".
I wish that my body could feel warm all year round.
Unfortunately, I must wear Ugg boots and gloves on the most hottest of days, in an attempt to prevent a Raynaud's flare.
|Hottest day of 2013|
I am still fragile from having started the year with shingles.
All I want for Christmas is for my Christmas / daily wish: a 'SclerodermaFreeWorld' and a 'RaynaudsFreeWorld', to be granted...
Medical Research provides immense hope for this wish to be granted.
Now that I am blessed to be a long term scleroderma survivor / scleroderma Olympian, I spend most of my spare time when not attending my symptoms, committed to the 'SclerodermaFreeWorld' and 'RaynaudsFreeWorld' wish.
This year, I am honored to have become a patient research ambassador with the National Institute for Health Research. video. 'Hall of Fame' article.
Since this is my last article for my column this year, I very much want to wish you a fairy happy Christmas holiday time, and a most prosperous 2019, feeling good.
Thank You for sharing the same daily wish in 2019:
Living the dream, scleroderma style.
An edited version of this article was published here, in my Column with Scleroderma News. December 2018.
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 am immensely grateful to James Carver, former MEP, for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
|The global Raynaud's trailblazer - Dr Howell and I, Sept 2017|
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
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