Thursday, 9 June 2016

DAY 9: Raynuad's Digital Ulcer Management Guidelines, Scleroderma Awareness Month 2016, Autoimmune Rare Disease

DAY 9: Raynaud's Digital Ulcer Management Guidelines, 
Scleroderma Awareness Month 2016 
Scleroderma, Raynaud's, Autoimmune Rare Disease
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.





An edited version of this article was published here, in my Column with Scleroderma News. 
June 2016. 

To read my articles: 


Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here   

March Autoimmune Disease Awareness Month 2018, Click here   

Global patient video, Click here      

If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here   


Scleroderma Awareness Month 2017 Patient Profiles Campaign, Click here     
 
Scleroderma Awareness Month 2017 Patient Profiles Campaign Patient Index, Click here        
The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer, Click here



Key Event Dates 2018, Click here     

Importance of an early diagnosis, Click here     

Taking Part in Clinical Research Trials, Click here    

The Importance of a Multi Disciplinary Medical ‘Dream Team’, Click here  

Expert Specialist Centres, Click here      

My Skin is Cured from Scleroderma, Click here      

UK Guidelines for Managing and Treating Scleroderma, Click here      

Fatigue, Click here      

Mobility, Click here       


Raynaud's, Click here    


World Scleroderma Day 29th June 2016, Click here

World Scleroderma Day 29th June 2017, Click here        



RARE DISEASE DAY:

The theme to this years Rare Disease Day is Research

Rare Disease Day 2018 – Research, Taking Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here     

2016 Rare Disease Day Patient Voice
2016 Rare Disease UK Parliamentary Reception 

2017 Rare Disease Day Flashback  

More unmet clinical needs  

Rare Disease Day 2016



Rare Disease Day is a fantastic opportunity for the entire rare disease community to shine a spotlight on their reality, combining as one unified voice. Where, at least one commonality presides –  
Medical Research provides the brightest light
for the illumination of the rare disease patients’ plight. 

I highlighted other areas of medical research interest within Week 3 of my Patient Profiles Campaign for Scleroderma Awareness Month 2017. 

VIDEO



Although rare disease patients are few in number, eg. 2.5 million scleroderma patients worldwide, (the World Scleroderma Foundation), the commonalities and golden hallmark for each rare disease patient are the same: 

Early Diagnosis
Expert Specialist Centres
Access to Innovative Medicines

Where MEDICAL RESEARCH investment is VITAL.

Research is the key. Abstracts from 2016 World Congress, Click here


Scleroderma Awareness Month Campaign 2016, Click here

View video, here

Preamble - here


The Family Day at the Scleroderma Unit, The Royal Free Hospital is taking place on the 19th May 2018. Browse the program, here

This year, I am celebrating 20 years of being a patient at this world leading expert specialist research centre. 

Sept 2017


I am eternally grateful to the global scleroderma trail blazers Dame Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking the scleroderma enigma, is nothing other than, superhuman.
I am truly humbled and inspired by their work ethic. I am wholly appreciative for Prof Denton’s continued medical expertise and support, especially during my barrister qualifying years, 1997 - 2004. 

1st March 2004, I qualified as a self employed practising barrister. Further to having been told in 1997, by my diagnosing doctor, that I was looking at a 15month prognosis. 

I very much hope to utilise my professional skills and qualifications along with my patient experience, to help achieve the #SclerodermaFreeWorld dream, hoping to improve understanding and best practice, in the meantime.
  
For latest updates follow: 

Facebook Page:

Twitter: @SclerodermaRF  @RaynaudsRf  


#SclerodermaFreeWorld           #RaynaudsFreeWorld
#ADAM #Scleroderma
#Raynauds
#RareDisease  

Living the dream, scleroderma style.  


Please DONATE to help fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.  



100% of your monies will be used for medical research purposes only. Thank You. 
#HOPE 


 

Last Update: April 2018





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