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.
ALL of the patients who have kindly taken part in the 2017 and 2018 global patient profiles campaign, report digital ulcers and soft tissue ulceration as part of their symptoms.
Read more about individual patients experiences, here
Presently, I have an ulcer on my right index finger, which arrived in March - nearly 3 months ago!
However, I know that I am lucky, compared with the nightmare which some other patients experience.
I am extremely honoured to have been a contributor with the medical team who compiled the NHS England guidelines for the treatment of Digital Ulcers, published June 2015.
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.
GASTROINTESTINAL, Click here
To Read My Articles:
'Scleroderma Awareness Month 2018: Medical Research Fundraising, RIP Kevin East', Click here
|Prof Chris Denton presenting a plaque to Kevin's daughter, Michelle, and wife, Debby, for funds raised in Kevin's memory for medical research at the Unit. Thanks to Michelle for the photo.|
Planning for the Future, Click here
Rare Disease Day 2020:
Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, here
Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt here
Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click here
Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click here
Rare Disease Day 2018 – Research, Taking Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
2017 Rare Disease Day Medical Research
2016 Rare Disease Day Patient Voice
provides the brightest light,
for the illumination of
the rare disease patients’ plight.
To read about medical research at the scleroderma unit, Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here
2018 Scleroderma Awareness Raising and Medical Research, Click here
Unmet Medical Needs, Click here
Calcinosis Video, Click here
The scleroderma tooth fairy, Click here
Skin Cancer and scleroderma, Click here
|Prof Chris Denton and I, Sept 2017|
This year, 2020, I am celebrating 22 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.
|Chat Magazine May 2019|
|James Carver, myself, Prof Chris Denton|
I had the pleasure of being a presenter and part of the European co-hort who gave a presentation at the European Parliament, Brussels, in honour of World Scleroderma Day 2015.
I am immensely grateful to James Carver, former MEP, for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
|The global Raynaud's trailblazer - Dr Howell and I, Sept 2017|
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
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