Nicola
Whitehill, UK.
Scleroderma Awareness Month 2018.
Raynaud's, Autoimmune Rare Disease.
#RaynaudsFreeWorld
#SclerodermaFreeWorld
 |
| Nicola Whitehill, UK |
TODAY is my birthday!!
Wehoo... I have made it to 45!
At 24 years of age,
I was told that I had scleroderma and I was looking at a 15 month
prognosis.....
Name:
Nicola Whitehill
Location:
Southport, UK
Diagnosis:
Diffuse cutaneous
systemic sclerosis, Raynaud’s
Year of
diagnosis: 1997
Age at
diagnosis: 24
Where / who
diagnosed you?
September 1997 -
Consultant Rheumatologist, Queen’s Medical Centre, Nottingham.
December 1998 – Dame
Prof Carol Black, Scleroderma Unit, The Royal Free Hospital, London.
Presenting symptoms:
Tight skin on my
arms, legs, hands.
Swollen puffy
fingers with no strength to undo jam jar or bottles.
Difficulty in
swallowing and opening mouth.
Overall fatigue and
feeling ‘out of sorts’.
How long did it take
for you to be diagnosed after first symptoms?
I had an initial
blood test with my GP which came back negative for arthritis, which surprised
me at the time, as my symptoms were similar to arthritis.
A second more
specific blood test revealed the presence of RNA polymerase III.
I was then referred
to the Consultant. This process probably took 6 weeks.
Read more about my
initial diagnosis, here
Current reality:
Living the dream scleroderma style!
I am now 14 years chemo – immunosuppressant free, with my only medication being bosentan 125 mg twice a day, which has made a remarkable improvement on my digital ulcers.
I was delighted to be told in 2016, by my hero, Prof Chris Denton, that
my skin is now cured from scleroderma. Read more, here
I have annual monitoring tests for my heart and lungs. Read more, here
It is a full time job managing my symptoms, read more, here
My Raynaud’s
sensitivity keeps me under house arrest all year round in an attempt to
minimise the attacks. Read more, here
 |
| Gloves and Uggs all year round |
I feel lucky that my level of disease is ‘stable’, even though, I am
living with the damage which the disease, at its most aggressive, caused.
My current symptom involvement and management:
Raynaud’s / digital ulcers. Bosentan 125mg bd.
GERD. Specialised diet and omeprazole in emergencies.
Musculoskeletal pain. Time manage, co-proxamol in
emergencies.
Fatigue. Time manage, rest when have to.
Calcinosis. Minocycline had little effect.
Mobility. Time manage, and be realistic.
Dry mouth. Drink lots of water.
I have written about
Fatigue, here
Mobility, here
‘Living the dream as the real life tin man’, here
‘My job today is to simply get better’, here
‘Ah, great another day to spend in bed, said no Raynaud’s scleroderma
patient, ever’, here
Diet, here
My 3 biggest current challenges:
Unpredictability of the flare up of symptoms.
Calcinosis, Raynaud’s, MSK pain, GERD.
Tin man body.
My 3 top tips for living with this diagnosis?
Make sure that you have the best medical team around you, Click here
I wrote about the importance of expert specialist centres, here
The importance of an early diagnosis, here
Taking part in clinical trials, here
Focus on the things which you can do, and which make you feel
good.
Scleroderma loves stress, so eliminate stressful, toxic
situations and people from your life.
Be independent of the good opinion of others.
This is your body and you know what is best for you.
If you need to rest, do. You are not being lazy, your body needs to
heal.
Be gentle with yourself and if you are having a worse day than ‘normal’,
respect your symptoms, in the hope that tomorrow, you may feel
better.
I set up my
cosmicfairy444 blog to share some of my coping strategies, Click here
My 3 wishes for the future?
#SclerodermaFreeWorld. #RaynaudsFreeWorld.
Cause and cure to be discovered in my lifetime.
I focussed on some of the current clinical unmet needs in my article for
Rare Disease Day 2017, where the theme was ‘Research where possibilities are
limitless’, here
My body to return to 100% wellbeing.
Prof Chris Denton does not retire !!
I have been truly blessed with how my 20 year scleroderma experience has
turned out compared with how it was supposed to turn out, as by my diagnosing
doctor.
I am eternally grateful to the superhuman beings Prof Chris Denton and
Dame Prof Black, whose medical expertise allowed me to realise my childhood
dream of qualifying as a barrister, and although I am not in full time
practise, I am able to transfer my skills to the #SclerodermaFreeWorld
plight.
This ‘coming out of the scleroderma closet’ only happened in October
2012, when I was invited to be part of a panel of patients to present to the
global GSK workforce, at the UK headquarters.
Sadly, one of my fellow patients, Penny Paterson is no longer with us.
I am honoured to have met with her, and laughed with her on that day, as
to our daily realities. Scleroderma makes you have to tweak your sense of
humour!
The other patient on the stage was Kim Fligelstone, who I would like to
take the opportunity to pay tribute to, for all the tireless effort which Kim
puts into helping fellow patients. As well as, for being a UK voice on the
global scleroderma stage, at FESCA, EULAR, WSF meetings and the
like.
I was delighted to
have been used as a pin up girl at the GSK UK HQ, some months later, following
the presentation.
 |
| May 2015 GSK UK HQ |
The following summer, the Daily Mail printed my story, here, and my public, global
awareness 'persona' began.
In 2015 I was delighted to have been part of the European cohort who
presented at the European Parliament on World Scleroderma Day.
Huge thanks to Jimmy Carver for making this event possible, in memory of
his late wife, Carmen, who sadly, passed from scleroderma, following a very
brave battle.
To view the presentation, Click here
To read more about Living the dream being your own Raynaud’s Scleroderma rare disease patient advocate, Click here
 |
| RIP Anne 31.5.42 - 2.10.14 |
I am eternally grateful to the Raynaud’s and scleroderma trailblazer
Anne Mawdsley, who is sadly no longer with us.
Anne lived with the diagnosis for over 30 years and was a living example
to us all, as to how she managed her symptoms.
In Anne’s memory I set up the Raynauds Scleroderma Awareness global
patients social media platforms. Read more about Anne, here
I chose the theme of patient profiles and research for this years
Scleroderma Awareness Month campaign, as I truly believe that my personal
experience was made possible, for me to still be here to be the scleroderma
parrot which I have become, further to me gaining an early-ish diagnosis and
attending an expert specialist centre by way of the Scleroderma Unit, The Royal
Free Hospital.
I therefore feel passionate that every patient presenting with
scleroderma symptoms is diagnosed early enough, whereby life threatening damage
is minimised.
As well as, it should not be a postcode / ZIP code / Country lottery as to the best management and treatment of scleroderma.
As well as, it should not be a postcode / ZIP code / Country lottery as to the best management and treatment of scleroderma.
I am a patient voice on the NHS England CRG for Specialised Rheumatology
and expert adviser to the European Medicines Agency
(EMA).
I have written articles for RareDisease UK and the European Rare
Diseases Organisation (EurorDis), as well as my blogs here, and my column with
Scleroderma News.
 |
| Rare Disease UK Parliamentary Reception, Rare Disease Day 2016 |
I am a member of the World Scleroderma Foundation.
I am also a member of the Pro-Vide Law team, here
I would like to thank all of the global scleroderma community for their
support with this campaign – sharing the same vision:
A Scleroderma Free World.
June 2017.
2018 UPDATE
My symptoms remain the
same, albeit ‘stable’, and remain a full time job for optimum management.
This year, I have had
a few ‘added extras’ thrown into my symptom mix:
Shingles
PTSD
Bowen’s disease flare
Gum recession /
loosening of teeth
Consequently, I have
been, and remain, ‘grounded’ here in Southport, whilst I nurture my body, and
rebuild my strength.
Sadly, I missed out
on the British Society for Rheumatology annual conference, held here on my door
step, in Liverpool.
I also missed out on
this year’s family day at The Scleroderma Unit, The Royal Free Hospital. This
year being particularly special for me, as it is my 20th year of
being a patient at this world class center of expertise.
However, during the
last year, I have been delighted to have appeared in various local courts, upon
special request, winning all of my cases.
This has not only
been a great boost to my morale, but also, helps me gauge as to how realistic
it is for me to return to my 60 hour a week role as a practising barrister. Sadly,
this Scleroderma Olympian still has a lot of preparation training to do.
RESEARCH 2018
I would most
definitely encourage any patient, to engage in a clinical trial, which is held
at a recognised expert centre.
 |
| Fellow patient Jeannie (Miss Universe), Me, Christine and Lauren from NIHR, March 2018 |
Investment in medical
research provides immense hope that our day to day reality can be improved, whether
that is by way of an improvement in medicines available, or, for the ultimate
dream, of a cure being found.
IN BETWEEN MEDICAL APPOINTMENTS
I spend most of my
time under house arrest in an attempt to control my Raynuad’s sensitivity.
I have various creative
projects underway including knitting and paper art.
I proof read various European
Medicines Agency documents, eg. Patient Information Leaflets, as well as run my
blogs and social media platforms.
As well as - Living
the dream, scleroderma style, with the dream team.
Hoping that one day
soon, the ultimate dream – a SclerodermaFreeWorld, becomes a reality.
there are many unmet clinical needs, which patients have in common.
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
Namely:
GASTROINTESTINAL,
Click here
Although these unmet needs are not immediately
life threatening, they cause havoc with the day to day quality of each patient’s
life.
An investment in medical research will most certainly
improve the currently ‘soul destroying’ reality, these unmet clinical needs bring.
 |
| Prof Chris Denton presenting a plaque to Kevin's daughter, Michelle, and wife, Debby, for funds raised in Kevin's memory for medical research at the Unit. Thanks to Michelle for the photo. |
'Scleroderma
Awareness Month 2018: Medical Research Fundraising, RIP Kevin East', Click here
2020 UPDATE:
2020 UPDATE:
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 del Galdo
‘Learning
from our patients’
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:
Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt here
Rare Disease Day 2020:
Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt here
Rare Disease Day 2019: Leaving a Legacy Gift, Click 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.
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
Please DONATE to help
fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.
100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You.
2016 Rare Disease Day Patient Voice
2016 Rare Disease UK Parliamentary Reception
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 |
 |
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.
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
100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You.
Last Update: Feb 2020.
Nicola
Whitehill, UK.
Scleroderma Awareness Month 2018.
Raynaud's, Autoimmune Rare Disease.
#RaynaudsFreeWorld
#SclerodermaFreeWorld
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