Living the dream, BE-ing your own Scleroderma,
Raynaud's Autoimmune, Rare Disease Patient Advocate.
Scleroderma, Raynaud's, Autoimmune Rare Disease.
Scleroderma, Raynaud's, Autoimmune Rare Disease.
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| Nicola Whitehill (diagnosed in 1997, aged 24) and the Dream Team |
Living with a rare disease
brings along many challenges, not least, becoming an expert in your own medical
condition.
The rare disease patient’s holy grail is to actually receive a diagnosis, whereby a treatment care plan can then be put together, which at best, will be focussed on symptom suppression, since there is no known cure.
The rare disease patient’s holy grail is to actually receive a diagnosis, whereby a treatment care plan can then be put together, which at best, will be focussed on symptom suppression, since there is no known cure.
I have always considered
myself to be a ‘lucky scleroderma’ patient in that, I have minimal internal
organ damage, with my Gastro-Intestinal system and my Musculo-Skeletal systems
taking the biggest hit.
I detail more of my 'tin-man' like symptoms, here
My diagnosing Doctor told me back in 1997, that I would
be in a wheelchair by Christmas (3 months away, at that time), I was looking at
15 months as a prognosis, and to give up my idea of being a barrister
(professional advocate).
He then prescribed me a cocktail of immunosuppressants and steroids.
I describe more about this, here
He then prescribed me a cocktail of immunosuppressants and steroids.
I describe more about this, here
A year later, I changed my
medical care to that of the global expert and trailblazer Prof Chris Denton at
The Royal Free Hospital in London, and almost 18 years to the day from when I
first dragged my painful, stiff, swollen body there, Prof Denton confirmed to
me that my skin is now cured from scleroderma. Read more here
In 2015 I presented ‘Systemic Sclerosis – the patient’s perspective’ at the annual British Society for Rheumatology conference. To view the presentation, Click here
However, it really is a full time job to manage my symptoms, with me using all of my ‘spare
time’ devoted to the Raynaud's, scleroderma, autoimmune, Rare Disease, awareness plight.
I have now been writing my
column at Scleroderma News for a year.
I receive no payment for my articles and set up my 'Just Giving' page, in the hope to generate funds specifically for medical research at the Scleroderma Unit led by Prof Chris Denton – to whom I am eternally grateful to, for his medical expertise and superhuman approach, to being of service to his patients and the global scleroderma community.
I receive no payment for my articles and set up my 'Just Giving' page, in the hope to generate funds specifically for medical research at the Scleroderma Unit led by Prof Chris Denton – to whom I am eternally grateful to, for his medical expertise and superhuman approach, to being of service to his patients and the global scleroderma community.
As I detailed and set out at
the start of my Column last year, it was, and still remains my intention to
make the content of my articles educational and informative, from not just the
raynaud's scleroderma patient perspective, but also from the rare disease
patient’s perspective in general, combined with being a voice for patients by
presenting the true reality of our daily experience when living with this body
hijacker.
I very much hope that I have achieved this with the content of my Column, as well as, with the content of this article.
I very much hope that I have achieved this with the content of my Column, as well as, with the content of this article.
During the first few years of
having been told those 3 words, ‘You have Scleroderma’ I was not overtly fluent
at speaking about the disease, and was more focussed on having my head in law
books so that I could pass my exams.
I would occasionally give radio interviews or magazine interviews, usually further to the persuasion from Anne Mawdsley, the Founder and President of the Raynaud's and Scleroderma Association, as it was then.
Sadly, Anne is no longer with us, having lost her battle with Raynaud's and scleroderma in 2014 after 30 years of living with the diagnosis.
I would occasionally give radio interviews or magazine interviews, usually further to the persuasion from Anne Mawdsley, the Founder and President of the Raynaud's and Scleroderma Association, as it was then.
Sadly, Anne is no longer with us, having lost her battle with Raynaud's and scleroderma in 2014 after 30 years of living with the diagnosis.
 |
| Anne Horton Mawdsley, campaigner and fundraiser, born 31 May 1942; died 12 October 2014 |
The entire global Raynaud's and scleroderma community are extremely grateful to Anne for her tireless fundraising and awareness raising, and for all that she did to improve the lives of patients with this disease.
Last year, I started my ‘Raynauds Scleroderma
Awareness Global Patients’ Facebook page, in Anne’s memory. The Facebook Page is linked with this blog.
During the summer of 2013 my 'incognito' status came to a sudden end, by way of me sharing my 'tin-man' like symptoms.
Although this aspect to
scleroderma puts me under house arrest, along with my Raynaud’s super-sensitivity,
I have been actively following and participating in the work of the APPG on
Rare, Genetic and Undiagnosed conditions here in the UK, chaired by Ben Howlett MP.
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| Nicola Whitehill, Ben Howlett MP, Dr Larissa Kerecuk |
This photo was taken last year, at the Rare Disease UK Parliamentary reception for Rare Disease Day 2016. It still remains a favourite and honour for me to have been in such good company.
Dr Larissa Kerecuk is a true superhero. She is the Rare Disease Lead at Birmingham Children's Hospital.
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| Nicola Whitehill, Ben Howlett MP |
I wrote about the day, here
I have taken part in several live Twitter sessions, using my @cosmicfairy444 alter ego, which Ben and Rare Disease UK have hosted live.
In essence, the golden
hallmarks for the rare disease optimum patient care are:
supported by a medical ‘dream team’
(expert specialist as the clinical lead).
Speedy access to innovative medicines to prevent life threatening damage
The UK Rare Disease Strategy sets out further details.
28th March 2017,
was a very encouraging day for the UK rare disease community.
Following a debate led by Ben, Philip Dunne MP, Minister of State for Health has announced that NHS England will develop an implementation plan, by the end of the year, as to its commitments as outlined in the strategy.
Following a debate led by Ben, Philip Dunne MP, Minister of State for Health has announced that NHS England will develop an implementation plan, by the end of the year, as to its commitments as outlined in the strategy.
To read the full transcript of
the debate, Click here
I highlighted the importance of the strategy, here, within one of the articles which I wrote for Rare Disease Day 2017, the theme being 'Research - possibilities are limitless'.
I focussed on the 'Raynaud's scleroderma patient unmet research needs', here, within my second article, for honouring Rare Disease Day 2017.
March is Autoimmune Disease Awareness Month #ADAM
All in all, on a day to day level, every rare disease patient is co-erced in to a world where being their own advocate is not a choice, it is a necessity for survival and improvements.
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| Nicola Whitehill 30.11.16 'My skin is cured from Scleroderma', Royal Free Hospital |
An edited version of this article was published here, in my Column with Scleroderma News. April 2017.
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.
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.
Living the dream, BE-ing your own Scleroderma,
Raynaud's Autoimmune, Rare Disease Patient Advocate.
Scleroderma, Raynaud's, Autoimmune Rare Disease.
Raynaud's Autoimmune, Rare Disease Patient Advocate.
Scleroderma, Raynaud's, Autoimmune Rare Disease.
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