Rare
Disease Day 2019 Theme: Bridging Health and Social Care
Leaving
a Legacy Gift by Nicola Whitehill
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
Recently, I celebrated my 20th year
anniversary of being a patient at the Scleroderma Unit, The Royal Free
Hospital.
At that time, December 1998, I would never have
believed that this was going to be possible. This was the first time of having
dragged my ‘tin man’ body, to the Unit.
And furthermore, I would not have believed that
I would eventually out-survive both of my parents, due to my aggressive
symptoms.
The previous year, my local rheumatologist
diagnosed me with the rare autoimmune disease, scleroderma. A year of taking
immunosuppressants and chemotherapy followed, with no clinical effect, other
than intolerable side effects.
In December 1998, I transferred my medical care
to the world class expert centre, the Scleroderma Unit. I was inspired by the
global scleroderma trailblazers Dame Professor Carol Black and Professor Chris
Denton.
I am eternally grateful for their expertise and
support, especially during my initial years, and without whom, achieving my
personal goal of becoming a barrister / professional advocate, would not have
been possible.
My experience shows that an early diagnosis is
paramount in an attempt to prevent potential life threatening damage, and that
a well-resourced and funded expert centre is therefore paramount to best
patient care.
Ever since first having heard those
life-changing words ‘You have scleroderma’, I have thought about my mortality,
daily. This was heightened during the time of taking various infusions in an
attempt to suppress the disease activity.
I was forced to delay my goal by a year, as I
was wired up to a drip at the time of my scheduled examinations. But in July
2001 I was ‘called to the Bar’ at Gray’s Inn, London, and I am truly grateful
to the Unit for helping me achieve this.
In March 2004, I completed my training and
studying and became a qualified barrister. In the back of my mind however, I
was unsure as to how long I could keep the scleroderma away, and at a
manageable level.
Yet in November 2016, Professor Chris Denton
told me that ‘my skin was cured from scleroderma’.
There is still currently no known cure for
scleroderma, with little knowledge of its cause. Due to the low incidence in
patient numbers (scleroderma being a rare disease), it is crucial that
resources and funding are found so that medical databases are compiled to
provide valuable research data and information.
The Royal Free Scleroderma Unit keeps a
database of patients to look for and identify common features in patient data.
As a passionate supporter, I have started to
think about how I can best support the Scleroderma Unit and help it when I am
no longer here.
I browsed the information on the many ways in
which the Royal Free charity helps supports the work of the Royal Free Hospital
and the Scleroderma Unit on the charity website.
I contacted the Charity and they sent me a very
easy to read booklet about making my Will.
This booklet has helped me to understand the
importance of doing this, as well as helping to inform me about the easiest and
most convenient ways for me to do so.
This booklet is available for free by contacting and asking for the Legacies Manager at the Royal Free Charity or by sending an email to: 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:
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.
sclerodermarf.blogspot.com
raynaudsrf.blogspot.com
Rare
Disease Day 2019 Theme: Bridging Health and Social Care
Leaving
a Legacy Gift by Nicola Whitehill
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
sclerodermarf.blogspot.com
raynaudsrf.blogspot.com
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