WORLD SCLERODERMA DAY
2015, The European Parliament, Brussels.
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
 |
| James Carver, myself, Prof Chris Denton |
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 live stream of the event please
follow this link:
On 30th June 2015 I had the pleasure of being part
of a dedicated passionate team comprised of European patient representatives
and medics, to illuminate the world of scleroderma to the European Parliament.
This was a particularly emotional day for me,
as it was 11 years to the day, that I last appeared in Crown Court wearing my
wig and gown, Crown Court robes.
On this day, 11 years ago, I really did feel
that my life had ended, as it was impossible for me to continue with my 60hour
working week and respect the variety of symptoms which my diagnosis was
presenting.
Along with the combination of withdrawing from
the daily 2g dose of immunosuppressant therapy of the previous 5 years.
It had been my childhood dream to be a
barrister, however, by the end of June 2004 it was apparent that the physical
challenges which the diagnosis brings, for me to continue working, was a
practical impossibility.
Along with all the will in the world, it was
still a physical impossibility for me to continue in the role.
By June 2004, I had totally exhausted my body
by not respecting my symptoms and was forced into leaving my career as a
barrister specialising in criminal law and family law- a role which I loved.
This was combined with my having to return to
my family home town of Southport, in the hope that I would receive some family
help.
Unfortunately my step father died 4 years
later, and the remainder of my family show no interest in my diagnosis other
than to label me as a 'recluse' (my half sister's view, last seen June 2014)
and 'a waste of a brain' (my mother's view).
However, I am independent of their view, and
choose to be an example of what I want to see, as by Gandhi's original saying ~
'Be the example you want to see'.
I have spent the last decade respecting the
mixed selection of symptoms which this diagnosis poses, to achieve a day to day
manageable situation.
The trip to Brussels was the biggest physical
challenge that I have had in the last decade.
I have been on self imposed house arrest,
whilst working on my 'coping routine', due to wanting to be in my own domain,
whilst working on feeling better.
It really was a privilege to be part of the
European team, in the hope that with a combined effort, more funds will become
available for unlimited research and ultimately cracking the enigma scleroderma
code, ensuring that nobody else has their life hijacked by this cruel,
relentless, physically challenging disease.
It is my personal goal to dedicate the
remainder of my life, on the uncoding of the encryption of the scleroderma
mystery, which will give some personal meaning to the existence that has now
become my life, in the hope that nobody else will have to go through this
experience.
PLEASE DONATE to the ROYAL FREE CHARITY, to
help fund desperately needed MEDICAL RESEARCH at the SCLERODERMA UNIT, THE
ROYAL FREE NHS HOSPITAL.
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
#Autoimmune #RareDisease #LifeChanging
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
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: Leaving a Legacy Gift, 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
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.
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:
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
Raynaud's:
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.
WORLD SCLERODERMA DAY
2015,
The European Parliament, Brussels.
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
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