|Hottest day of 2013, I have to wear Ugg boots and gloves|
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|
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.
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.
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An edited version of this article was published here, in my Column with Scleroderma News.
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