Planning for the Future – Nicola
Whitehill.
AUTOIMMUNE DISEASE AWARENESS MONTH.
AUTOIMMUNE DISEASE AWARENESS MONTH.
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
Over the last two decades, my condition has
enabled me to see first-hand how the Scleroderma Unit at the Royal Free
Hospital has developed and grown. The work of,
and support, given by this world-renowned
centre of excellence for care of patients with scleroderma and
connective tissue diseases are simply exceptional.
The clinical trial unit is very proactive,
which provides me with immense hope that the causes of and a cure for
scleroderma will be eventually discovered, and hopefully during my lifetime.
Sadly, I have also lost many friends to
scleroderma and I know that I am a lucky scleroderma patient. Lucky, as I
continue to survive, and lucky, as I have minimal internal organ involvement. I
am sure this is due to me having a relatively early diagnosis and treatment plan provided by the Scleroderma
Unit.
For over 20 years, I have lived with the daily
uncertainty as to whether my disease would ravish my body to the point that
medical intervention is futile. It only follows that any sensible person in my
position would sort out their personal affairs.
This has made me think about what my wishes would be, in looking after my loved ones when I am no longer here, and to think about my making my Will, so that I can have peace of mind that my wishes will be followed.
This has made me think about what my wishes would be, in looking after my loved ones when I am no longer here, and to think about my making my Will, so that I can have peace of mind that my wishes will be followed.
As a patient, I am immensely grateful for the
work and support of the Scleroderma Unit over the last 20 years. As a world
leader in its field, the Unit’s input into global partnerships and
collaboration is crucial for the advancement of medical research.
So as well as looking after my loved ones, this
is why I am leaving a gift in my Will to the Scleroderma unit. I know that the
money will be used to support global medical research into treatments, and
eventually a cure for Scleroderma.
I have decided that there is no time like the present, and I have taken advantage of the free Will writing service offered by the Royal Free Charity to make my Will, and to ensure my wishes are fulfilled.
I have decided that there is no time like the present, and I have taken advantage of the free Will writing service offered by the Royal Free Charity to make my Will, and to ensure my wishes are fulfilled.
Making my Will could
not have been easier. I am extremely impressed with the professionalism of the
service which I received from the free and independent Will writing scheme.
The whole process was treated with sensitivity and at no time did I feel under any pressure or obligation to rush the process. I chose 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.
The whole process was treated with sensitivity and at no time did I feel under any pressure or obligation to rush the process. I chose 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
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
Rare Disease Day 2019: Leaving a Legacy Gift, Click here
Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click here
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
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.
Planning for the Future – Nicola
Whitehill.
AUTOIMMUNE DISEASE AWARENESS MONTH.
AUTOIMMUNE DISEASE AWARENESS MONTH.
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
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