Gift in My Will.
AUTOIMMUNE DISEASE AWARENESS MONTH.
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
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.
Planning for the Future, Click here
Rare Disease Day 2019: Leaving a Legacy Gift, Click here
Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click 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 – 10.00 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:
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.
Gift in My Will
AUTOIMMUNE DISEASE AWARENESS MONTH.
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
