Scleroderma Overlap Symptoms.
Autoimmune Disease Awareness
Month.
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#RaynaudsFreeWorld
#SclerodermaFreeWorld
Scleroderma. March, Autoimmune Disease Awareness
Month.
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#RaynaudsFreeWorld
#SclerodermaFreeWorld
An autoimmune disease is one
where the body’s natural defence system, the immune system, malfunctions /
‘trips out’, resulting in the body attacking itself.
The American Autoimmune Related Diseases Association Inc, AARDA, list there to be over 100 different, currently identified,
autoimmune diseases.
With the rare
disease Scleroderma, the body’s autoimmune system becomes
activated causing fibrosis / thickening to the skin, blood vessels, muscles,
connective tissue, bones and internal organs. In essence, the ENTIRE body is
attacked.
Currently, this activation
process, ‘on switch’, is still not fully understood, scientifically. And,
sadly, neither is the ‘off switch’. Current treatments target symptom
suppression, as opposed to disease eradication.
Investment in medical research is crucial for progress in scientific understanding.
Investment in medical research is crucial for progress in scientific understanding.
Common presenting symptoms
for most of the autoimmune diseases include, tiredness by way of extreme exhaustion, as well as, swelling and inflammation of the body of the joints, hair loss.
And of course, PAIN. Making for the daily mantra ‘Ah great, another day to spend in bed’.
And of course, PAIN. Making for the daily mantra ‘Ah great, another day to spend in bed’.
These presenting symptoms
can often lead to a slow diagnosis. Which, can lead to further complications, which
maybe, potentially, life threatening.
Another commonality which
presides amongst the autoimmune disease community is the ‘Invisible Disability’ label.
For, most autoimmune patients, and scleroderma patients alike, hearing ‘But you look so well’ is a welcome compliment, however, it can be extremely frustrating, when the actual reality, is that, you feel quite the opposite.
For, most autoimmune patients, and scleroderma patients alike, hearing ‘But you look so well’ is a welcome compliment, however, it can be extremely frustrating, when the actual reality, is that, you feel quite the opposite.
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| Hottest day of 2013, Im wearing Uggs and gloves |
Some patients have told me of their frustration of not being believed as to the severity of their ‘invisible symptom’, not just by their families, but also by the medical professionals, with whom they have seen.
A common symptom seen within
the autoimmune disease community, is the presence of Raynaud’s
phenomenon.
However, not all Raynaud’s patients will have an autoimmune condition, this is when it is known as primary Raynaud’s.
However, not all Raynaud’s patients will have an autoimmune condition, this is when it is known as primary Raynaud’s.
When Raynaud’s presents with
another condition, eg. an autoimmune disease, it is known as secondary
Raynaud’s.
Throughout the course of
March, for Autoimmune Disease Awareness Month, I have been reposting the global
patient profiles from my scleroderma awareness 2017 campaign.
ALL of
the patients, who kindly took part, reported experiencing Raynaud’s, along with,
digital ulcers, being a foregone conclusion.
All of the patients reported exhaustion, swelling and pain to be current ongoing unmet clinical needs.
All of the patients reported exhaustion, swelling and pain to be current ongoing unmet clinical needs.
The British Society for Rheumatology, BSR, has a
clear strategy to try and improve the current treatment for such patients:
‘Rare
Rheumatic Musculoskeletal Diseases (RMDs) can be categorised
into two distinct groups:
Rare
autoimmune rheumatic diseases, comprising:
Systemic
Vasculitis
(eg.
ANCA-associated Vasculitis, Giant Cell Arteritis, Takayasu’s Arteritis,
Behçet’s Syndrome)
Autoimmune
Connective Tissues Diseases
(eg.
Systemic Lupus Erythematosus, Systemic Sclerosis (Scleroderma),
Myositis, Sjogren’s Syndrome)
Rare
non-autoimmune rheumatic diseases, comprising:
Metabolic,
sclerosing and dysplastic bone diseases
(eg.
Osteogenesis Imperfecta, Fibrous Dysplasia, Hyperostosis Syndromes, SAPHO
syndrome)
Dysplastic
diseases of joints and inherited disorders of connective tissue
(eg.
Epiphyseal Dysplasias, Ehlers Danlos Syndrome, Marfan Syndrome,
Stickler’s
Syndrome). ’
The BSR recommends
that:
‘This group of
patients can be best served, along with the implementation of the UK Rare Disease Strategy by being considered under a
single ‘umbrella’.
This is because they
share a number of common features, including:
-
overlapping clinical and serological features
-
similar disease mechanisms, many of
which have origin in immune system abnormalities
-
convergent treatment pathways;
immunosuppression, B cell depletion or cytokine inhibition
-
multisystem nature of these conditions,
often requires simultaneous care across several specialties. Multidisciplinary
‘one-stop-shop’ clinics enabling greater cost efficiency and clinical
effectiveness
-
In common with other rare diseases,
these conditions are also slow to benefit from therapeutic advances.'
I had the pleasure and honour to present the ‘Raynaud’s and
Scleroderma patient’s reality’ at the BSR Conference in 2015.
BSR published Scleroderma Management Guidelines, June 2016.
Huge thanks to the current president, Dr. Peter Lanyon, for his outstanding commitment to the rheumatological community as a whole.
Huge thanks to the current president, Dr. Peter Lanyon, for his outstanding commitment to the rheumatological community as a whole.
Future key events for this year, 2018, include the Family Day at The Scleroderma Unit, 19th
May, which this Scleroderma Olympian is already in training for!
Clearly, there is a large need for
improvement in the medical and clinical care of the autoimmune patient, and
even more so for the rare disease, autoimmune patient, such as Scleroderma.
Living the dream, scleroderma style. March 2018.
This video shows all of the global patients who kindly shared their Scleroderma,
Raynaud’s, autoimmune Rare Disease experience for awareness purposes:
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.
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
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. 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.
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
100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You.
Last Update: Feb 2020.
Scleroderma Overlap Symptoms.
Autoimmune Disease Awareness
Month.
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#RaynaudsFreeWorld
#SclerodermaFreeWorld
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