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 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 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 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 DAY 7 Raynaud’s phenomenon, and DAY 8  Raynaud’s Management.

My hands are the best that they have been in terms of digital ulcers, and calcinosis, since diagnosis, in 1997.

This article was originally published here  in my Column with Scleroderma News.

To read my articles:
The importance of an early diagnosis click here 
the role of medical research click here
the importance of expert specialist centres click here
diet and nutrition click here
taking part in research trials click here
the UK guidelines for management and treatment of Scleroderma click here
my skin is cured from scleroderma click here 
BSR and BHPR guideline for the prescription and monitoring of non-biologic disease-modifying anti-rheumatic drugs, Raynaud's, Scleroderma, Rare Disease click here  

EULAR guidelines for treatment of systemic sclerosis scleroderma, click here  

Please DONATE to help fund medical research at the Scleroderma Unit at The Royal Free hospital where 100% of your donation will be used to fund vital medical research. Thank You.
Living the dream, scleroderma style, hoping for a cure
#SclerodermaFreeWorld #RaynaudsFreeWorld
29th June World Scleroderma Day. Read more here
Scleroderma Awareness flashback 2016. Read more here  
Scleroderma Awareness 2016 Campaign Index Click here  
Follow Raynauds Scleroderma Awareness Global Patients Facebook Page for latest updates 
To view the Facebook page Scleroderma Awareness Month 2016 campaign images Click  here
To view Facebook page Photo Album ‘Wellbeing Side to living with Raynaud’s and Scleroderma’ Click  here  
Please use the icons below to share this article #SclerodermaAwareness

 


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