In 1997 I was diagnosed with scleroderma and given a 15month prognosis. In 1998 I became a patient at the Scleroderma Unit. The cause and cure to both Scleroderma and Raynaud's remain unknown. Please donate to help fund medical research where 100% of your donation will be used for research purposes only.
The Royal Free Hospital has the largest centre specialising in scleroderma in the UK led by Professor Chris Denton.
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
This year, 2024, I will have spent over half of my life, 27 years, living with a scleroderma (systemic sclerosis) and Raynaud's diagnosis, and all that entails. 🤢
Eternally grateful to Dame Professor Carol Black and Professor Chris Denton Royal Free London NHS Foundation Trust 😇
Please donate to medical research to identify a cure and the cause of scleroderma, at the Scleroderma Unit Royal Free Hospital. Every penny will be used for research purposes only. Thank You 🙏
Scroll down to tick box 'your donation will be used where the need is greatest. However please tick this box if you would like to donate to a specific appeal or fund'. Click on the box to reveal 'a where would you like to give to' drop down menu. Scroll down to the Scleroderma and Raynaud's research option and click on this option.
There is currently
no known cure for scleroderma, with little knowledge of its cause. Due to the
low incidence in patient numbers, as a rare disease, this presents challenges
in the conducting of clinical trials.
Over the past 20
years, I have taken part in several clinical trials at the Scleroderma Unit
under the supervision of Professor Chris Denton. These trials are essential to
improving understanding of the disease, as well as, the identification of
better medicines.
I most certainly
experienced an improvement in my symptoms as a result of one of these clinical
trials.Sadly, once the trial had
completed, I was no longer able to have the drug as it does not have a licenced
use for scleroderma, although it is licensed for other conditions. As a
double-blind placebo controlled trial, I was not privy to knowing if I had been
given the active drug or the placebo dummy.However, the improvement in my mobility and MSK pain was nonetheless a
very clear positive and welcome outcome.
To know that there
is a medicinal ‘something’ which could help to improve my symptoms and which,
further to more clinical research, may become available to my diagnosis in the
future, fills me with hope: hope that my personal daily reality may be improved
one day.And speaking from my own
personal experience, I am certain that newly diagnosed patients will almost
certainly benefit from future research developments.
I am immensely
grateful to the Scleroderma Unit, Professor Chris Denton, and the NHS for
keeping me alive, decades beyond my initial prognosis at the time of my initial
diagnosis, and way beyond what I could ever have expected was possible.
However, investment in medical research is still desperately and urgently
needed to eliminate this very cruel, debilitating, and life changing disease.
There are exciting
developments at the Royal Free including expansion of the Institute of Immunity
and Transplantation, which includes the scleroderma clinical service.The new Pears Building and associated
expansion of specialist research opportunities offer a concrete example of what
is possible with investment and effort and will ensure that cutting edge laboratory
facilities are available in the future.
As mentioned in my
last blog, I recently decided to write my Will to make sure my loved ones will
be looked after when the inevitable finally happens. I also decided to include
the Scleroderma Unit at the Royal Free Hospital in my Will because I want to
continue to support their world-class, ground-breaking and much needed medical
research into scleroderma, and I know that my legacy gift will make a real
difference to the work of the Unit.
Making my Will using
the Royal Free Charity’s free Will writing service could not have been easier.
I am extremely impressed with the professionalism of the service which I
received from the independent service provider. The whole process was treated
with sensitivity and at no time did I feel under any pressure or obligation
from the Royal Free Charity. I chose in my own time which firm and who I wanted
to assist me with the contents of my Will. The local solicitor was efficient
and thorough, making the experience a little more comfortable by not drawing
out the process.
I feel a huge sense
of relief and peace of mind from knowing that my personal affairs will be
honoured, as by my wishes, and that the people and causes I care most about
will benefit when I am no longer here.
You can get more
information about this free and independent Will writing service from the Royal
Free Charity website at: www.royalfreecharity.org or by emailing the
Royal Free Charity Legacies Manager at: rf.legacies@nhs.net.
Scleroderma Family Day
2020
25th
Anniversary Meeting
The Atrium, Royal Free
Hospital, London, NW3 2QG
Chair: Professor Chris
Denton
PROVISIONAL PROGRAMME
09.30 – 10.00Registration
and Coffee
10.00 – 10.20WelcomeDame
Carol Black
Prof Chris Denton &
David Abraham
10.20 – 10.40What
is a Biopsy?Dr Kristina Clark
10.40 – 11.05Dental
aspects of Scleroderma Prof Stephen Porter
11.05 – 11.25Gastrointestinal
problems – Dr Fiza
Ahmed
shedding
new light on old problems
11.25 – 11.50Pulmonary
hypertension and the heartDr Gerry
Coghlan
11.50 – 12.15Scleroderma
cohort studies – Dr
Francesco
‘Learning
from our patients’ del Galdo
12.15 – 14.15LUNCH
BREAK – see below
14.15 – 14.4525
years of progress – Prof
Chris Denton
from
‘black box’ to ‘positive trials’
14.45 – 15.15International
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 ResearchChristine Menzies
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.
To read about medical research at the scleroderma unit, Click here
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.
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
2016, 29th June. Origins of the date, Click 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.
