Happy 70th Birthday to the NHS.
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#RaynaudsFreeWorld
#SclerodermaFreeWorld
Happy 70th Birthday to the NHS. Thank You, for keeping me alive.
On the 5th July 2018, over here in
the UK, the National Health Service (NHS), celebrated its 70th year
from when it was started, by the then Health Secretary, Nye Bevan.
‘For the first time, hospitals, doctors,
nurses, pharmacists, opticians and dentists were brought together under one
umbrella to provide services for free at the point of delivery’. History
I am eternally grateful to the NHS for keeping
me alive, and, for the excellent standard of care, which I continue to receive.
I truly believe that without the NHS, I would
not have survived the aggressive onset and progression of disease which I experienced
during my diagnosis, and the following years, until my disease activity became
stable.
 |
| The Royal Free Hospital, 27.9.17 |
Furthermore, I remain overjoyed that my ‘skin is cured from scleroderma’, having not been able to stretch my arms, in 1997, due to the extreme skin tightness.
However, my daily reality is that it is a full
time job for me to manage my symptoms.
Which, even on the hottest of summer days, brings along many challenges, as well as, Raynaud’s attacks, due to any temperature decrease, regardless of the resulting temperature being ‘warm’.
Which, even on the hottest of summer days, brings along many challenges, as well as, Raynaud’s attacks, due to any temperature decrease, regardless of the resulting temperature being ‘warm’.
 |
| Hottest day of 2013 |
Thankfully, my symptoms are currently stable. I have regular monitoring appointments.
These include annual heart and lung tests. which are carried out at my local hospital, here in Southport.
I am now living with the damage which, the disease at its most active, caused.
Ultimately, I know that I am a lucky
scleroderma survivor. Even though, the disease has removed many facets of my
life which I enjoyed, as well as, forcing my inner ‘Bond Girl’ to abscond into
oblivion.
However, due to my early-ish diagnosis, followed
up by the world class care I received, and, continue to receive from the
Scleroderma Unit at The Royal Free Hospital, combined with my local NHS providers, here I am, living the dream as a ‘scleroderma parrot’- obsessed with
the dream of a Scleroderma Free World, along with a Raynaud’s Free World, becoming
a reality.
My experience prompted me to profile patients
from around the world, for my Scleroderma Awareness Month 2017 and 2018
campaigns. INDEX.
I have detailed more about my patient experience and journey, on Day 12 of my global patient profiles campaign, for Scleroderma Awareness Month 2018.
I am extremely grateful to all of the patients who have kindly shared their experience for
awareness purposes, as well as, I owe huge thanks to the families of the
patients whom, sadly, have died from the disease.
The conclusions of which, showed that for optimum
patient care, 3 hallmarks preside:
Where, investment in medical research is
crucial, to improve the day to day reality, as well as, the long term outlook
for the entire global scleroderma community.
Although as scleroderma patients we are relatively
few in number, 2.5 million worldwide, the small sample of patients included
within my global patients profile campaign show that, there are many unmet clinical needs, which patients have in common:
GUM RECESSION, TOOTH
EXTRACTS, Click here
TELANGIECTASIA,
Click here
SCLERODACTYL HANDS,
Click here
GASTROINTESTINAL,
Click here
Although these unmet needs are not immediately life threatening, they cause havoc with the day to day quality of each patient’s life.
An investment in medical research will most certainly
improve the currently ‘soul destroying’ reality, these unmet clinical needs bring.
In 2015, I was honoured to become a patient voice
on the NHS England advisory group for Specialised Rheumatology.
In this role, I am totally blown away by the
commitment and dedication shown by the medics involved, to improving the
service which the NHS has to offer in this medical speciality.
I feel particularly honoured to have been a patient
voice, on the NHS England policy for the management of digital ulcers, published
July 2015.
 |
| Fellow patient Miss Universe, me, Christine and Lauren from NIHR team |
I am also very honoured to have become a Patient Research Ambassador for the National Institute of Health Research, the research side to
the NHS. Video.
Due to the systemic involvement of my diffuse
scleroderma, I am known to many of the different medical specialities included
within the NHS umbrella.
For optimum best practice and care, a medical ‘dream team’ is paramount, with an expert specialist as the clinical lead.
I am truly grateful for my medical ‘dream team’,
made possible and available to me, by the world class leading healthcare
system, the NHS.
 | |||
| Prof Denton and I, Sept 2017 |
 |
| Dr Kevin Howell (Raynaud's world trailblazer) |
 | |
| Dr Sykes, Consultant Rheumatologist Southport Hospital | , August 2017. |
 |
| Andrea, Southport Hospital Pharmacist, August 2017 |
Thank You, NHS.
Happy 70th Birthday.
Happy 70th Birthday.
For latest updates follow:
Facebook Page:
Twitter: @SclerodermaRF @RaynaudsRf
#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.
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.
Happy 70th Birthday to the NHS.
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#RaynaudsFreeWorld
#SclerodermaFreeWorld
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