For me, in an attempt to minimise my Raynuads symptoms, hibernation began in October.
This entails being under house arrest, unless I really do need to go out.
Such ‘special days’ out are reserved for medical appointments and juicing ingredient re-stocks (living the dream, scleroderma style).
In addition, to wearing multiple layers of thermal garments and heatwarmer accessories, making for the desertion of my inner Bond Girl persona, years ago.
I have been taking Bosentan 125mg twice a day, continuously, for the last four years, and have seen a marked, and most welcome, improvement with the reduction in digital ulcers I now experience.
I am extremely grateful that my ulcers did not develop into gangrene or tissue death resulting in amputation, which I know for some patients, this is their Raynaud’s reality.
I can experience an attack which compromises of colour changes (blue, white, black, red) to my hands and feet, accompanied by intense muscle spasms throughout my entire body.
This is a most unpleasant, horrendous and painful experience, making for this social butterfly being transformed into a confined eskimo Michelin Man, in an attempt to reduce the attacks.
The level of tiredness which follows an attack is beyond exhausting.
There is currently no cure to this extremely debilitating and painful condition, requiring much needed financial investment into medical research to improve the understanding of what causes the blood vessels to spasm, as well as, what biological processes need to be activated to prevent it.
100% of the fundraising monies and donations will go towards medical research led by Dr Kevin Howell and Prof Denton, who are world leaders and authorities in Raynaud’s.
This is going to be a very busy year for raising awareness. Increased commitment for medical research investment will provide the eureka moment needed for unlocking the Raynaud’s and Scleroderma code.
An edited version of this article was published here, in my Column with Scleroderma News. January 2017.
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.
|The global Raynaud's trailblazer - Dr Howell and I, Sept 2017|
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
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.