Raynaud’s Scleroderma Association Newsletter Autumn 2015
Patient Story: Nicola Whitehill
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
sclerodermarf.blogspot.com
raynaudsrf.blogspot.com
Nikki has
scleroderma, but she doesn't let it stop her:
In 1997, aged 24, I
was diagnosed with the autoimmune disease diffuse systemic sclerosis and
Raynaud’s phenomenon.
At that time, I had
graduated from Aston University with BSC (Hons) in Applied and Human Biology
and I was working as a medical representative in Nottingham whilst studying for
a postgraduate diploma in Law, with view to realising my childhood dream of
being a barrister.
I was advised, medically,
that I had a 15 month prognosis as there was no cure and, more devastatingly to
me, to give up on my dream.
I was prescribed
powerful disease modifying agents and left to hope for the best.
Six months passed,
and my disease was becoming more aggressive than ever, with my body feeling as
though it was turning to stone with the stiffness and constant pain.
I therefore decided
to seek a second opinion from one of the World’s leading experts on the
diagnosis, Professor Black in London.
Within 30 seconds of
being in her company, I knew that she wanted to help me get better and, of huge
importance to me, she wanted to help me realise my dream.
I was started on a
very intense cytotoxic treatment plan, which subjected me to numerous IV
chemotherapy drips in combination and followed up with high doses of
immunosuppressants.
My only other option
was a stem cell therapy transplant, and I really did not like the idea of this.
My IV infusions
commenced a few days before Christmas 1998 and, Christmas for me that year, was
spent in my bed at my parents house, feeling very, very sick.
By the following
Easter I had made a slight improvement with my symptoms but was unable to sit
my Law exams, meaning that I had to drop back a year.
I was wholly
devastated about this, as this was another year added to the timescale of me
achieving my dream job.
Unfortunately, by
now, my hands had become extremely painful and stiff, making it very difficult
for me to hold a pen and further to my Consultant, who was now Prof Denton,
very kindly, writing a medical letter in relation to the disability which I was
experiencing due to my diagnosis, I was given my own room, a keyboard and extra
time to sit my exams.
Thankfully, I
responded well to the medication and finally passed my postgraduate exams in
the summer of 2000, handed in my notice as a medical rep, and started Bar
School (the academic training required to be a barrister) in the September.
I was elated that my
dream was back on track, even though I had to spend every spare moment when I
was not studying in my bed, having to rest and be respectful of my symptoms. In
July 2001 I was called to The Bar at Gray’s Inn.
However, I now
needed to complete my vocational training by way of completing a ‘pupillage’-
the ‘apprenticeship’ part of being a barrister, with places extremely limited
and few and far between.
I started working
with an in-house barrister and finally started my pupillage in September 2003.
Prior to the
commencement of my pupillage, Professor Denton very kindly wrote a letter to my
barrister mentor, explaining the nature of my diagnosis and how it would be
best managed in the work place, concluding that my diagnosis should not prevent
me from working, should the correct procedures be in place to assist me.
On the 1st March 2004,
I appeared at Nottingham Crown Court in my wig and gown as a self employed
practising barrister.
I was ecstatic that
my dream had been realised along with my disease symptoms now being at a
manageable level.
It was then decided
to decrease the daily dose of immunosuppressants, which I had been taking for
the previous 5 years, with view to stopping the medication entirely.
Unfortunately by the
end of June 2004 I experienced quite a severe relapse in my symptoms, prompting
me to have to stop working and relocate to my family hometown of Southport.
At this time I was
hugely disappointed that my body was not well enough to perform my 60 hour a
week job as a barrister.
However, I felt so
ill by way of having pushed myself for the initial first few years of the
diagnosis, that it then took me six years to establish a daily routine to
manage my symptoms, and begin to see a reversal of some of them.
Throughout all of
this time, Professor Denton has been of huge support and comfort with my
progress, not only by my regular twice a year check ups, but also by the
support given to allow me to manage my disease at a local level with the local
medical professionals.
This ‘shared care’
team approach has been crucial for the success that I see with the management
of my disease to this day.
My diagnosis is
multi complex requiring me to have a team of medical professionals helping with
my return to well being, with Professor Denton in London as the Conductor.
I am also extremely
grateful to my local Rheumatologist, Dr Sykes, for not only agreeing to assist
with my shared care, but also for recognising in me, (which at that time I had
totally forgotten about due to feeling so ill), some of the skills which I had
acquired, and which could be used to help educate others about the disease.
I was invited to
give annual presentations to the new intake of doctors covering their
rheumatology rotation, as well as sit as a test exam patient for the Liverpool
Medical School’s Locas exams (Doctor qualification).
I very much enjoyed
this interaction, using my skills acquired as a professional advocate, and I
was driven by the hope that an early diagnosis, due to the immediate
recognition of the symptoms, would help a new patient.
My General
Practitioner, Dr Hughes, has also been crucial with the smooth running of my
return to well being.
The years of
chemotherapy and immunosuppressants have left me susceptible to frequent,
common infections which requires intervention from primary care as well as my
local pharmacist.
Since my diagnosis
also affects my mouth by way of causing gum recession and tooth infection, I am
also very grateful to my dentist, Mr Booth, and dental hygienist, Ms Doran, for
their expertise in helping me manage these symptoms.
The combination of
this multi-disciplinary team approach has enabled me to feel well enough to
become more active using my professional skills and qualifications, by way of
being a regular volunteer with the charitable organisations for my diagnosis,
as well as an expert patient with NHS England; the European Medicines Agency;
European Rare Diseases Organisation, and more recently, one of the two patient
representatives involved in the National Network of Quality in Primary Care.
In relation to my
dreams, I have a new dream now - to be able to say that I used to have the
diagnosis of Systemic Sclerosis and Raynaud’s,. In the meantime, I hope to use
the remainder of my life helping to illuminate and improve the patient journey,
as well as be a pioneer for a cure and better understanding.
http://www.raynauds.org.uk/patient-stories/454-nikki
AUTUMN 2015.
PLEASE DONATE to the ROYAL FREE CHARITY, to
help fund desperately needed MEDICAL RESEARCH at the SCLERODERMA UNIT, THE
ROYAL FREE NHS HOSPITAL.
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
#Autoimmune #RareDisease #LifeChanging
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
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
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.
Raynaud’s Scleroderma Association Newsletter Autumn 2015
Patient Story: Nicola Whitehill
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
sclerodermarf.blogspot.com
raynaudsrf.blogspot.com
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