Day 9 Scleroderma Awareness Month – Digital Ulcer Management
Today’s image shows the current NHS England management guidelines for The Best Practice of Digital Ulcer Management.
I was honoured to be the ‘scleroderma patient expert’ member of the NHS England medical team who put these guidelines together and were published in July 2015.
I am extremely passionate about raising awareness concerning digital ulcers.
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 requiring the use of gloves. Tasks involving water add a whole new dimension, as it is better to keep ulcers as dry as possible to assist in 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 GI related.
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 in Days 8 and 7.
I have tealed my nails for Scleroderma Awareness Month. My hands are the best that they have been in terms of digital ulcers, and calcinosis, since diagnosis, in 1997.