|Hottest day of 2013, I have to wear Ugg boots and gloves|
As all patients know, all too well, there is currently no cure for Raynaud’s.
My nemesis season, being Winter.
Consequently, my reality for optimum symptom management, means me being housebound for most of the year. Intense hibernation and house arrest, are a foregone conclusion from October – April.
The time taken to eventually ‘warm up’ again- bringing the colour back to my extremities, will vary from minutes to hours, depending upon the intensity of the attack.
This will then be followed by complete exhaustion, whilst my body repletes its energy levels, which, further to my scleroderma symptoms, are minuscule at the best of times.
I can not describe accurately, the excrutiating pain which ulcers bring. Along with, the time consuming process for them to heal.
In the event that they do not heal, and become infected, amputation of the affected digit / area, is a realistic possibility. Hence my strict house detention rules.
|Thanks to Kelli for this image - used extensively throughout the awareness campaign|
As stated earlier, there is currently no cure for Raynaud’s, with treatments altering blood pressure, whilst widening the blood vessel, in an attempt to maintain the circulation and blood supply.
October is Raynaud’s Awareness Month.
My argument being, that, for a new compound to be given the licensed indication for treatment of systemic sclerosis, a positive effect on digital ulcers must be seen, along with other biomarkers, and not just, a reduction in skin fibrosis.
Management of Digital Ulcers – UKSSG
The research article ‘Defining skin ulcers in systemic sclerosis: systematic literature review and proposed World Scleroderma (WSF) definition, is contained within the same edition.
Both the Editorial and the research article set out the difficulties which digital ulcers pose in their identification, management and treatment.
Since, in my view, digital ulcers, albeit not life threatening per se, have not been given the medical and pharmaceutical recognition which they deserve, as by their causing complete misery and catastrophe to the Raynaud’s and scleroderma patient's day to day activities.
Living the dream, scleroderma style.
Please DONATE to help fund medical research at The Scleroderma Unit, The Royal Free Hospital, London where 100% of all of your monies will be used for medical research purposes only. Thank You.
#RareDisease #Hope #Belief
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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.
|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.