“Taking control of my
life, working together with
health professionals to
achieve my personal goals.”
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
sclerodermarf.blogspot.com
raynaudsrf.blogspot.com
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 15month
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, Prof Black in London.
Within 30seconds 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, Prof
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 home town of Southport.
At this time I was hugely disappointed that my
body was not well enough to perform my 60hour 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 Prof 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 which 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
Prof Denton in London, being 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.
And 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, I am an expert patient with NHS
England; the European Medicines Agency; European Rare Diseases Organisation,
and more recently, I have been appointed as 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, and in the meantime, I hope to use the remainder of my life,
helping to illuminate and improve the patient journey, as well as pioneer for a
cure and better understanding.
This article was written for the EULAR Steiner prize 2015, March 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: 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
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.
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:
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.
“Taking control of my
life, working together with
health professionals to
achieve my personal goals.”
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
sclerodermarf.blogspot.com
raynaudsrf.blogspot.com
No comments:
Post a Comment