Raynaud’s,
Scleroderma and Digital Ulcers
Autoimmune Rare Disease
#SclerodermaFreeWorld #RaynaudsFreeWorld
Here in the UK, summer is
gradually transforming into autumn. The decrease in temperature can be seen by
the change in colour to the leaves on the trees, as well as, a change in colour
to my fingers and toes.
Even on a hot summer’s day, I
struggle to maintain a healthy normal colour to my hands and feet. The smallest
of breezes or a draft, is sufficient to set off my Raynaud’s symptoms.
 |
| Hottest day of 2013, I have to wear Ugg boots and gloves |
As all patients know, all too well, there is currently no cure for Raynaud’s.
During the course of the last
two decades, I have learnt, (the hard way, I hasten to add), that prevention is
most certainly the best way for me to manage my Raynaud’s hypersensitivity.
My nemesis season, being Winter.
My nemesis season, being Winter.
Consequently, my reality for optimum symptom management, means me being housebound for most of the year. Intense hibernation and house arrest, are a foregone conclusion from October – April.
‘You should get out more’ is
certainly not a viable option for me, whilst trying to maintain a constant body
temperature, in the hope to prevent a Raynaud’s attack.
In the event of a Raynaud’s
attack, my entire body will go into spasm, as well as, I lose the colour to my
hands and feet.
The time taken to eventually ‘warm up’ again- bringing the colour back to my extremities, will vary from minutes to hours, depending upon the intensity of the attack.
This will then be followed by complete exhaustion, whilst my body repletes its energy levels, which, further to my scleroderma symptoms, are minuscule at the best of times.
The time taken to eventually ‘warm up’ again- bringing the colour back to my extremities, will vary from minutes to hours, depending upon the intensity of the attack.
This will then be followed by complete exhaustion, whilst my body repletes its energy levels, which, further to my scleroderma symptoms, are minuscule at the best of times.
DIGITAL ULCERS
Prior to me taking the
medicine, bosentan, I would constantly have ulcers on my fingers, and
sometimes, on my toes.
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. Hence my strict house detention rules.
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. Hence my strict house detention rules.
I included Digital Ulcers as
one of the many Unmet Clinical Needs of the Scleroderma patient, for my article
for Rare Disease Day 2017.
Digital ulcers were also
highlighted by EVERY patient, who kindly, took part in my patient profiles
campaign for Scleroderma Awareness Month 2017.
In particular:
Kelli from the USA
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| Thanks to Kelli for this image - used extensively throughout the awareness campaign |
As stated earlier, there is currently no cure for Raynaud’s, with treatments altering blood pressure, whilst widening the blood vessel, in an attempt to maintain the circulation and blood supply.
October is Raynaud’s Awareness Month.
Sadly, I am unable to tolerate
any of the recommended ‘treatments’, as my blood pressure is too low and I
experience the side effects of dizziness and nose bleeds.
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.
Within my advisory
role to the European Medicines Agency (EMA), my suggestion that digital ulcers
be included in ALL scientific clinical trial protocol has been endorsed -
against much protest from pharmaceutical company representees!
My argument being, that, for a new compound to be given the licensed indication for treatment of systemic sclerosis, a positive effect on digital ulcers must be seen, along with other biomarkers, and not just, a reduction in skin fibrosis.
My argument being, that, for a new compound to be given the licensed indication for treatment of systemic sclerosis, a positive effect on digital ulcers must be seen, along with other biomarkers, and not just, a reduction in skin fibrosis.
Management of Digital Ulcers – UKSSG
The Editorial contained within Vol. 2 Issue2, May – Aug 2017, of the Journal of Scleroderma and related Disorders, sets out ‘The critical need for accurately defining digital ulcers in scleroderma’
The research article ‘Defining skin ulcers in systemic sclerosis: systematic literature review and proposed World Scleroderma (WSF) definition, is contained within the same edition.
Both the Editorial and the research article set out the difficulties which digital ulcers pose in their identification, management and treatment.
The research article ‘Defining skin ulcers in systemic sclerosis: systematic literature review and proposed World Scleroderma (WSF) definition, is contained within the same edition.
Both the Editorial and the research article set out the difficulties which digital ulcers pose in their identification, management and treatment.
However, the presence of this
topic being discussed within the Journal, is very encouraging to the patient.
Since, 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.
Living the dream, scleroderma style.
Since, 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.
Living the dream, scleroderma style.
Please DONATE to help fund medical research at The Scleroderma Unit, The Royal Free Hospital, London where 100% of all of your monies will be used for medical research purposes only. Thank You.
#SclerodermaFreeWorld #RaynaudsFreeWorld
#RareDisease #Hope #Belief
Follow Raynauds Scleroderma Awareness Global Patients Facebook Page for latest updates
An edited version of this article was published here, in my Column with Scleroderma News.
September 2017.
Scleroderma Family Day
2020
25th
Anniversary Meeting
The Atrium, Royal Free
Hospital, London, NW3 2QG
Chair: Professor Chris
Denton
PROVISIONAL PROGRAMME
09.30 – 10.00 Registration
and Coffee
10.00 – 10.20 Welcome Dame
Carol Black
Prof Chris Denton &
David Abraham
10.20 – 10.40 What
is a Biopsy? Dr Kristina Clark
10.40 – 11.05 Dental
aspects of Scleroderma Prof Stephen Porter
11.05 – 11.25 Gastrointestinal
problems – Dr Fiza
Ahmed
shedding
new light on old problems
11.25 – 11.50 Pulmonary
hypertension and the heart Dr Gerry
Coghlan
11.50 – 12.15 Scleroderma
cohort studies – Dr
Francesco
‘Learning
from our patients’ del Galdo
12.15 – 14.15 LUNCH
BREAK – see below
14.15 – 14.45 25
years of progress – Prof
Chris Denton
from
‘black box’ to ‘positive trials’
14.45 – 15.15 International
speaker – Dr
Madelon Vonk
Scleroderma
Management in Netherlands
15.30 Raffle
Lunchtime Discussions Groups /
Demonstrations include:
Clinical Trials Rachel
Ochiel and team
National Institute of Health Research Christine Menzies
Drug Information / monitoring Pharmacy
Massage Keith Hunt MBE
Pulmonary Hypertension Education / nursing Sally
Reddecliffe/Adele Dawson
Rheumatology Laboratory Research
Laboratory Staff
Scleroderma Education / Nursing Louise
Parker/ Joseph Cainap
Thermography Dr Kevin Howell
SRUK Ollie Scott
Sjogren’s syndrome British
Sjogren’s Society
To Read My Articles:
Gift in My Will, Click here
Planning for the Future, Click here
Rare Disease Day:
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:
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 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
2018 Scleroderma Awareness Raising and Medical Research, Click here
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.
Read more, here.
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.
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
Please DONATE to help
fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.
Alternatively, to make a direct donation to fund medical research via the Royal Free Charity, Scleroderma Unit, Click here
100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You.
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.
provides the brightest light,
for the illumination of
the rare disease patients’ plight.
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 overall.
For optimum
patient care, 3 hallmarks preside: 
INVESTMENT in MEDICAL RESEARCH is CRUCIAL.
To read my articles:
Celebrating 20 years of being a patient at the Scleroderma Unit, Click here
2019 New Challenges, Click here
NIHR Video: 'My
Experience of Clinical Trials', 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
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
SCLERODERMA:
Global Patient Profiles 2018 Video, Click here
Unmet Medical Needs, Click here
Calcinosis Video, Click here
The scleroderma tooth fairy, Click here
Skin Cancer and scleroderma, Click here
Unmet Medical Needs, Click here
Calcinosis Video, Click here
The scleroderma tooth fairy, Click here
Skin Cancer and scleroderma, Click here
 |
| Sept 2017 |
 |
| Prof Chris Denton and I, Sept 2017 |
 |
| June 2019 |
 |
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.
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. Along with the
Raynaud's world trail blazer, Dr Kevin Howell.
I am truly humbled and inspired by their work ethic and commitment to
their patients.
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 original diagnosing doctor, that I
was looking at a 15month prognosis.
 |
| Chat Magazine May 2019 |
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. Read more, here
World Scleroderma Day
2015, 29th June.
 |
| 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.
To view the presentation, Click here
Raynaud's:
October:
Raynaud's, Click here
 |
| The global Raynaud's trailblazer - Dr Howell and I, Sept 2017 |
For latest updates follow / subscribe:
@SclerodermaRF
@RaynaudsRf
@SclerodermaRF
@RaynaudsRf
Twitter, Instagram, Blogger, YouTube, Facebook Page:
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
Alternatively, to make a direct donation to fund medical research via the Royal Free Charity, Scleroderma Unit, Click here
100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You.
Last Update: Feb 2020.
Raynaud’s,
Scleroderma and Digital Ulcers
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
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