Medical Research - Get involved: Take Part, Raise Awareness
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#RaynaudsFreeWorld
#SclerodermaFreeWorld
At the start of this
year, I was delighted to have been invited to join the National Institute for Health Research (NIHR) as a Patient Research Ambassador (PRA) for the dermatology and
musculo-skeletal departments, The Royal Free Hospital, London.
The NIHR is,
‘The most integrated
clinical research system in the world. Funding high quality research; training
and supporting researchers; providing world class facilities.’
As, all of these
roles are influencers in the medical research landscape. Ranging from the
design of a clinical trial (my EMA role), to best practice and guidelines (NHS
England role).
Further to my recent, local ‘Page 3 Girl’ debut in my local newspaper, (published last month, during June, Scleroderma Awareness Month), I am truly honoured and humbled to have been quoted on the front page, as well as, featured within, the recently published NIHR annual report.
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| NIHR Annual Report: Front Page |
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| NIHR Annual Report, Case Study |
Thus, putting
the spotlight on Raynaud’s and scleroderma, and the huge significance of
medical research within the rare disease community.
I was overjoyed that
the NIHR annual report was shared by various global media.
Including Med-Tech and The European Pharmaceutical Manufacturer quoting me, and naming Raynaud’s and scleroderma, in their headline story.
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| MedTech |
Including Med-Tech and The European Pharmaceutical Manufacturer quoting me, and naming Raynaud’s and scleroderma, in their headline story.
As rare disease
patients we know all too well that, any and every day, is an opportunity to
engage conversation about our reality.
Over here in the UK,
we are truly blessed to have a world class healthcare service by way of the NHS,
paralleled with the NIHR.
Medical research is
the crux to uncovering the cause and cure to not just scleroderma and Raynaud’s,
but to any disease.
This is why, I have made
medical research the underlying theme for all of the articles, which I have
written for my column with Scleroderma News, and my personal blog: blog.raynaudsscleroderma.co.uk,
during the course of the last few years.
During my 21 years
of living with diffuse scleroderma and Raynaud’s, I have taken part in several
clinical trials.
All of these trials were led by Prof Chris Denton, at the Scleroderma Unit, at The Royal Free Hospital.
All of these trials were led by Prof Chris Denton, at the Scleroderma Unit, at The Royal Free Hospital.
It was very important
for me to know that the trials were being led by such an expert team.
I am not the most willing of participants of taking any drug, licensed or non licensed, at the best of times.
I am not the most willing of participants of taking any drug, licensed or non licensed, at the best of times.
However, I saw my participation
as an opportunity to investigate if there was a mystery compound which could
improve my day to day reality with my symptoms.
And, if I could not benefit directly, that, patients who may be diagnosed in the future, may benefit from the therapy, if the results proved favourable for such.
And, if I could not benefit directly, that, patients who may be diagnosed in the future, may benefit from the therapy, if the results proved favourable for such.
Sadly, one of the
difficulties of researching a rare disease is the lack of patient numbers
available, who are eligible to take part.
This is why global collaboration, as well as, global data bases and expert specialist centers, are
paramount to make progress in the medical research arena for the rare disease
community.
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 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
SOFT TISSUE, ULCERS,
Click here
TELANGIECTASIA,
Click here
SCLERODACTYL HANDS,
Click here
INVISIBLE
DISABILITY, Click here
RAYNAUD'S, 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.
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| Fellow patient Miss Universe, me, Christine and Lauren from NIHR team |
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.
I very much recommend for any patient to take part in a clinical trial run by a center of excellence.
Living the dream,
scleroderma style.
For latest updates follow:
Facebook Page:
Twitter, Instagram, YouTube: @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.
An edited version of this article, Click here, was published in my Column with Scleroderma News. August 2018.
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
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| Sept 2017 |
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| Prof Chris Denton and I, Sept 2017 |
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| June 2019 |
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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.
Medical Research - Get involved: Take Part, Raise Awareness
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#RaynaudsFreeWorld
#SclerodermaFreeWorld
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