DAY 12: Nicola Whitehill
Scleroderma Awareness Month 2016
Raynaud's, Autoimmune Rare Disease
Wehoo,….. as the image shows – today is my
birthday, and how delighted I am, that I have made it to 43, 17 years post my
initial medical prognosis expiry date.
I am eternally grateful for the super human,
amazing Prof Denton whose medical expertise and care, helped me realise my
childhood dream of becoming a barrister in 2004, 7 years post diagnosis, and
whilst taking 2g daily chemotherapy and immunosuppressants.
Although I am no longer able to perform the
physical requirements of the barrister role due to scleroderma, I feel
extremely honoured that I made it, despite all of the odds against me, to
become a female practising barrister in the UK.
I know that this would not have been possible
without the support of the scleroderma unit at the Royal Free hospital, andso I
have set up a just giving page for Prof Denton’s research fund, as a way of
saying thank you.
Please donate to help fund research for a cure, Click here
or, if in the UK, text: SURF 97
to 70070
I have transferred my professional
qualifications and skills to the global scleroderma patient best practice of
care arena. I am an expert adviser to NHS England, The European Medicines
Agency (EMA), The British Society for Rheumatology (BSR), European Rare
Diseases Organisation (EURORDIS) as well as, I sit on the Best Practice Rare
Disease Advisory council, and, I have my column/blog with scleroderma news.
Since I am under self imposed house arrest most
of the time, due to my symptoms, social media and the internet have become a
huge lifeline for me. I have the ‘Raynauds Scleroderma Awareness global
patients’ facebook page, as well as, I help Kelli with the ‘Healing Loving
Scleroderma with Real Food’ facebook page.
Here is my personal blog www.cosmicfairy444.blogspot.co.uk
Although my dream of working at The Old Bailey
being a warrior of justice has had to be ‘tweaked’ due to scleroderma, if the
UK Parliament is sitting, I make it a date with myself to be watching Prime
Minister Questions every Wednesday at 12pm. Even my dogs get involved by
sitting with me on the setee!
On Wednesday 2nd March I had the
pleasure of attending the RareDiseaseUK Reception for Rare Disease Day at the
Houses of Parliament. This event is most definitely one of my few patient
highlights of the last 19 years. I blogged about it, Click here
It really was an awesome feeling for me, to be
arriving at the House of Commons on a Wednesday, when Parliament were sitting,
just before midday. However, the whole event took weeks of preparation on my
part prior, to ensure stamina levels, in addition to the couple of weeks I had
to rest for, afterwards.
At the Reception, I had the pleasure of meeting
with other rare disease patient advocates as well as the chair of the All Party
Parliamentary Group (APPG) for rare, genetic and undiagnosed conditions, Ben
Howlett MP, who further to much pestering from me, will kindly, raise a
scleroderma, rare disease related question to the Department of Health on July
5th in Parliament, in honour of World Scleroderma Day 29th
June 2016.
Which leads me on to another highlight of my
patient experience of the last 19 years- presenting at the European Parliament
on World Scleroderma Day 2015.
Eleven years after I had last appeared in
court, wearing my robes. At that time, in 2004, I did not know if I would still
be around eleven years later, andso to be around, and, at the European
Parliament was a huge honour for me.
Unfortunately, the travel for this trip was a
harsh reminder as to why I no longer travel abroad, for I spent the remainder
of the summer in my bed, recovering.
To view the full presentation, Click here
More recently, I had the huge honour to
co-present a Webinar for Rareconnect, on How to Start an Awareness Day, Click here
It took me until 2013, 16 years post diagnosis
before I came out of the scleroderma closet to share with the world what had
happened to me and the reality of this diagnosis.
See, The Daily Mail
I know that I am a lucky scleroderma patient in
the whole scheme of things, which is why I am compelled to use my
qualifications and skills to improve the scleroderma patient landscape, as well
as the rare disease patient landscape.
Here is the link to my personal experience
survival guide, Click here
And, in the meantime, carry on living the
dream, in the hope for a cure.
An edited version of this article was published here, in my Column with Scleroderma News.
June 2016.
To read my 2018 Update, Click here
Current Unmet Clinical Needs 2018:
CALCINOSIS, Click here
GUM RECESSION, TOOTH
EXTRACTS, Click here
SOFT TISSUE, ULCERS,
Click here
TELANGIECTASIA,
Click here
SCLERODACTYL HANDS,
Click here
INVISIBLE
DISABILITY, Click here
RAYNAUD'S, Click here
GASTROINTESTINAL,
Click here
 |
| 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
Global Patient
Profiles Campaign Index, Click here
Importance of Medical
Research and Awareness Raising, Click here
NIHR Video: 'My
Experience of Clinical Trials', Click here
Week 3, 2017 Patient
Profiles: Medical areas of current interest, Click here
Week 2, 2017 Patient
Profiles: Progress in Medical Research, Click here
Week 1, 2017 Patient
Profiles: Introduction to multi complex disease, Click here
Why I chose global
Patient Profiles for my 2017 / 2018 Campaign, Click here
2017 Global Patient
Profiles Campaign Introduction, Click here
'Being your own
awareness advocate', Click here
Scleroderma Awareness
Month Flashback 2017, Click here
Scleroderma Awareness
Month Flashback 2016, Click here
My 2016 Campaign, A
to Z: Scleroderma and Raynaud's diagnosis, Click here
2016 Campaign Video, Click
here
March 2018 Autoimmune
Disease Awareness Month, Click here
World Scleroderma Day
2017, 29th June, Click here
World Scleroderma Day
2016, 29th June. Origins of the date, Click 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 MEP for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
I am immensely grateful to James Carver MEP for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
To view the presentation, Click here
To view my article 'Why Global Collaboration is Important', Click here
All patients included within the global patient profiles campaign, highlight the URGENT need for an investment in medical research, as well as:
Early Diagnosis
Expert Specialist Centres
Access to innovative medicines
ALL being, crucial factors for best practice management and care.
To read my articles:
Raynaud's, Click here
This year, I am celebrating 20 years of being a
patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.
 |
| Sept 2017 |
 |
| Prof Chris Denton and I, 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. Read more, here
For latest updates follow:
Facebook Page:
Twitter: @SclerodermaRF @RaynaudsRf
Google Plus: RaynaudsSclerodermaAwarenessGlobalPatients
#SclerodermaFreeWorld
#RaynaudsFreeWorld
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: June 2018
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