Nicola
Whitehill, UK
Patient
Profiles DAY 12
June
Scleroderma Awareness Month 2017
Raynaud's, Autoimmune Rare Disease
 |
| Nicola Whitehill, UK |
TODAY is my birthday!!
Wehoo... I have made it to 44!
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.
What were your 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
I am now 13 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 last year, 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
 |
| 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.
Please describe your
current symptom involvement and management, including any treatments taking and
taken:
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
What are your
3 biggest current challenges due to your diagnosis?
Unpredictability of
the flare up of symptoms.
Calcinosis,
Raynaud’s, MSK pain, GERD.
Tin man
body.
What are your
3 top tips for living with your 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.
What are your 3
wishes for the future?
#SclerodermaFreeWorld
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.
 |
| 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 |
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.
To read more about why I chose ‘Patient Profiling and
Research’ as the focus of my 2017 campaign, Click here
Why Research and Patient Profiles? Scleroderma Awareness
Month 2017, Raynaud's, Rare Autoimmune Disease, Click here
INDEX to Scleroderma
Awareness 2016 Campaign, Click here
June 2016.
To read my articles:
Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here
March Autoimmune Disease Awareness Month 2018, Click here
Global patient video, Click here
Becoming a Patient Research Ambassador for the NIHR, Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
The Pandora’s Box of the rare autoimmune disease
Scleroderma, Raynaud's and Cancer, Click here
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here
RARE DISEASE DAY:
Rare Disease Day 2018 – Research, Taking
Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
2016 Rare Disease Day Patient Voice
2016 Rare Disease Day Patient Voice
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.
I
highlighted other areas of medical research interest within Week 3 of my Patient Profiles Campaign for Scleroderma Awareness Month 2017.
VIDEO
VIDEO
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:
Early Diagnosis
Expert Specialist Centres
Access to Innovative Medicines
Where MEDICAL RESEARCH investment
is VITAL.
Research
is the key. Abstracts from 2016 World Congress, Click here
The Family Day at the Scleroderma Unit, The Royal
Free Hospital is taking place on the 19th May 2018. Browse the
program, here
This year, I am celebrating 20 years of being a
patient at this world leading expert specialist research centre.
 |
| Sept 2017 |
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.
I am truly humbled and inspired by their work
ethic. 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
diagnosing doctor, that I was looking at a 15month prognosis.
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.
For latest updates follow:
Facebook Page:
Twitter: @SclerodermaRF @RaynaudsRf
Google Plus: RaynaudsSclerodermaAwarenessGlobalPatients
#SclerodermaFreeWorld
#RaynaudsFreeWorld
#ADAM #Scleroderma
#Raynauds
#RareDisease
Living the dream, scleroderma style.
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.
#HOPE
Last Update: April 2018
No comments:
Post a Comment