Initial
Diagnosis – Autumn 1997
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#RaynaudsFreeWorld
#SclerodermaFreeWorld
Initial
Diagnosis – Autumn 1997
Resulting in my life being
turned upside down, forcing me to abandon most of my dreams, and to be grateful
for defying the medical statistics and long term outlook for most scleroderma
patients.
During the summer of 1997, I
had started to feel very tired all of the time.
This was quite out of character for me as I had an insatiable zest for life.
Not only was I working as a medical representative for Bristol Myers Squibb, I was studying on a part time, distance learning basis for a postgraduate diploma in law, which would then lead me to pursue my childhood personal desire to be a barrister and professional advocate.
This was quite out of character for me as I had an insatiable zest for life.
Not only was I working as a medical representative for Bristol Myers Squibb, I was studying on a part time, distance learning basis for a postgraduate diploma in law, which would then lead me to pursue my childhood personal desire to be a barrister and professional advocate.
By early September 1997, my
hands had become swollen and puffy with shiny tight skin across my fingers.
I had difficulty moving my fingers as they were stiff, as well as, I was having difficulty in gripping and making a full fist.
I also found it difficult to open my mouth wide and to swallow.
I wrote more about my initial symptoms on Day 4 of my June Scleroderma Awareness Campaign 2016
I had difficulty moving my fingers as they were stiff, as well as, I was having difficulty in gripping and making a full fist.
I also found it difficult to open my mouth wide and to swallow.
I wrote more about my initial symptoms on Day 4 of my June Scleroderma Awareness Campaign 2016
As the summer season in 1997
started to change into autumn, not only did I feel exhausted, but I also
noticed that I was starting to actually feel the cold.
This was a totally new experience for me, as even in the winter, I would seldom be wearing thermal clothing, previously. I thought that the ‘thermal vest’ was something to look forward to, for when you reached late middle age!
This was a totally new experience for me, as even in the winter, I would seldom be wearing thermal clothing, previously. I thought that the ‘thermal vest’ was something to look forward to, for when you reached late middle age!
It was during Autumn 1997 that my internal thermometer ‘tripped out’ and it still remains very demanding.
It took a few more months before the color changes would become visible in my fingers, presenting classic Raynaud’s symptoms, causing me to have to wear several layers even in the summer, which are then ‘bulked up’ in the winter. I wrote more about this, here
Having observed the change in my hands, combined with the tiredness and swallowing difficulties, I booked an appointment to see my GP medical doctor.
At the first consultation, the stiff puffy fingers were thought to be a form of arthritis, however, the blood test for arthritis returned a negative result. Which was a huge relief at the time, although, I knew that something was not right.
I was then required to give another blood test which was used for a specific autoantibody test, and bingo, this test returned a positive RNA Polymerase result, confirming a diffuse systemic sclerosis diagnosis.
The EULAR /ACR classification
code is the current criteria used for confirming a scleroderma diagnosis. DAY 6
I was then referred to my local hospital Consultant medical doctor in Rheumatology, who advised me that I was looking at a 15month prognosis and to give up on my idea of being a barrister.
I felt as though my whole world had ended and that the rug had been pulled out from under my feet.
There was no way
that I was giving up on my law studies, I had already paid a fortune in tuition
fees, afterall!
By February 1998, my
scleroderma disease was so aggressive with my skin involvement, that I was
unable to stretch my arms or legs, and it was itchy, swollen and painful.
I returned to the hospital and commenced all of the different immunosuppressants and disease modifying agents available, with little improvement on the disease, but horrendous side effects and continual nausea.
In December 1998 I
went to see Dame Prof Black at The Royal Free Hospital in London.
Within 30 seconds of being in the consultation appointment, I knew that Dame Prof Black would do everything she could to help me, especially with me achieving my dream of being a barrister.
Within 30 seconds of being in the consultation appointment, I knew that Dame Prof Black would do everything she could to help me, especially with me achieving my dream of being a barrister.
15months of intense
chemo drips (cyclophosphamide) combined with mycophenolate mofetil stabalised
my symptoms, stopping the scleroderma in its tracks, thankfully. Otherwise, I
was scheduled to be having a stem cell transplant, as my name was on the waiting
list.
By now, Prof Chris
Denton had returned from his scleroderma studies in the US and I had the
pleasure of becoming his patient. My local Consultant medical doctor, (the
diagnosing doctor), would not entertain ‘shared care’.
At the end of 2004 I
returned to my family home town of Southport, and I am delighted that my local
Consultant medical doctor here, Dr Hannah Sykes, is extremely supportive and
co-operative with me having shared care with the expertise of the scleroderma
unit at The Royal Free Hospital and Prof Denton’s medical expertise.
This co-operation from the medics most certainly makes for an improved patient experience, especially given that medical appointments / tests and the like, become the long term scleroderma patient’s full time job due to the multi disciplinary care required.
This co-operation from the medics most certainly makes for an improved patient experience, especially given that medical appointments / tests and the like, become the long term scleroderma patient’s full time job due to the multi disciplinary care required.
I wrote about the
importance of expert specialist centres, here
I wrote about the
long term scleroderma patient’s annual check up, here
As well as, I wrote
about the Olympian effort and attitude needed to become a Scleroderma Olympian,
here
To view the UK
treatment and management of scleroderma guidelines, Click here
I know that I am a
very lucky scleroderma patient by way of minimal internal organ damage, even
though I have had my life and body hijacked by scleroderma.
This has made me be dedicated to using the remainder of my life to improve the scleroderma, Raynaud's, Autoimmune Rare Disease patient experience. Read more, here
This has made me be dedicated to using the remainder of my life to improve the scleroderma, Raynaud's, Autoimmune Rare Disease patient experience. Read more, here
I take huge inspiration from the scleroderma global trail blazer and pioneer, Prof Denton, who I am eternally grateful to, for his medical expertise and helping me realise my dream of qualifying as a self employed barrister on 1st March 2004.
Although I am no
longer physically able to continue with my 60 hour per week role, I have
transferred my professional skills to the global scleroderma landscape- being a
voice at all levels, including decision making body levels such as NHS England,
the British Society for Rheumatology, RareDiseaseUK the European Rare Diseases
Organisation and The European Medicines Agency, and my column at Scleroderma
News.
I am also delighted
to have joined the ProVIDE Law team in Liverpool, with my first article focussing on
'patient best care/practice and clinical litigation'.
Clearly these roles
are secondary to the priority of me attending to, and respecting my symptoms,
as, I want to feel good.
I very much hope to
develop this platform further, for advancing the scleroderma and rare disease
patient plight, thereby improving the 4 main hallmarks of the rare disease
patient:
- commitment to research investment
- access to innovative
medicines
Scleroderma has made me have
to tweak my original dreams, however, I feel truly honoured to be using my
background qualifications and skills to being a scleroderma, Raynaud’s and rare
disease patient on the global stage, as well as raising awareness and funds for
the Scleroderma Unit at The Royal Free Hospital.
I have a new dream now :
a SclerodermaFreeWorld and RaynaudsFreeWorld,
imagine that.
An edited version of this article was published here, in my Column with Scleroderma News.
September 2016.
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
Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt 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
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.
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.
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.
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.
Initial
Diagnosis – Autumn 1997
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#RaynaudsFreeWorld
#SclerodermaFreeWorld
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