Welcome to my blog - I was diagnosed in 1997, and given a 15month prognosis. In 1998 I became a patient at the Scleroderma Unit, The Royal Free Hospital. The cause and cure to both Scleroderma and Raynaud's remain unknown. Please donate to help fund medical research where 100% of your donation will be used for research purposes only.
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Thursday, 9 June 2016
DAY 9: Raynuad's Digital Ulcer Management Guidelines, Scleroderma Awareness Month 2016
DAY 9 Scleroderma Awareness Month: Raynuad's Digital Ulcer Management Guidelines
Today’s image shows the
current NHS England management guidelines for The Best Practice of Digital
I was honoured to be the
‘scleroderma patient expert’ member of the NHS England medical teamwho put these guidelinestogether and were published in July 2015.
I am extremely passionate
about digital ulcers.
Thanks to USA patient Kelli Schrag for this image
Before I started taking
Bosentan 125mg twice a day continually, in October 2012, my hands would always
have at least 2 ulcers, as well as, my toes.
The pain from ulcers combined
with sclerodactyl fingers and scleroderma skin is excruciating, which can be
triggered by the smallest of touches.
Not only are ulcers extremely
painful, they are extremely disabling and debilitating. Making most tasks,
require gloves. Tasks involving water, add a whole new dimension, as, it is
better to keep ulcers as dry as possible to assist their healing, making
personal hygiene tasks a challenge, even when wearing waterproof gloves! A dry
ulcer will require moisturising with emollient to help with its healing.
Should a digital ulcer become
infected, antibiotic intervention will be necessary, which in some cases, may
be too late, leaving amputation as the only option. Early medical intervention
is essential, in an attempt to prevent this from being a reality. And, of
course, continual antibiotic use brings along its own set of problems, usually
Once the ulcer heals, if it
ever does, and this could take years, the body’s tissue and skin where the
ulcer had been, is left extremely sensitive and pitting / scarring can be seen.
There is currently no cure for
digital ulcers, with treatments targeted at symptom suppression only.
‘Prevention is better than cure’ as I outlined inDAY 7Raynaud’s phenomenon, andDAY 8Raynaud’s Management.
My hands are the best that
they have been in terms of digital ulcers, and calcinosis, since diagnosis, in
This article was originally published here in my Column with Scleroderma News.