The Role of Medical Research
Scleroderma, Raynaud's, Autoimmune Rare Disease.
Scleroderma, Raynaud's, Autoimmune Rare Disease.
The role of medical research
is of huge importance to the Raynuad’s and scleroderma patient, and to the rare
disease patient, in general.
There is currently no cure for scleroderma, as well as, the causative mechanisms still remain a mystery, albeit, the understanding of the cause and cure, is accelerating faster than ever before.
There is currently no cure for scleroderma, as well as, the causative mechanisms still remain a mystery, albeit, the understanding of the cause and cure, is accelerating faster than ever before.
Investment in medical research
provides immense HOPE to the
scleroderma patient, which, when living with an incurable diagnosis, is the
next best thing to the cause and cure being discovered.
Hope has
been my constant companion of the last 19 years, along with the inspiration and
comfort taken from being a patient of one of the world’s leading scleroderma
pioneer medics, Prof Chris Denton.
At the 4th Systemic
Sclerosis World Congress held in February 2016, in Lisbon- The Journal of
Scleroderma and Related Disorders (JSRD) was launched.
The JSRD is dedicated solely to scleroderma and its overlap disorders.
The JSRD is dedicated solely to scleroderma and its overlap disorders.
The presence of this respected
medical journal on the world stage provides hope to patients, by way of showing the current ongoing, actual
medical research results and investment into such.
Including, the approaches being utilised to endeavour to shine the desperately needed light on improving scleroderma patient treatments and care.
Including, the approaches being utilised to endeavour to shine the desperately needed light on improving scleroderma patient treatments and care.
Volume 1 Number 2, May - August 2016 JSRD includes
the following contents:
Reviews
Systemic sclerosis trial
design moving forward
Sindhu
R. Johnson, Dinesh Khanna, Yannick Allanore, Marco Matucci-Cerinic, Daniel E.
Furst
Extracorporeal shock wave
therapy for digital ulcers associated with systemic sclerosis
Shinichiro
Saito, Tomonori Ishii, Kenta Ito, Hiroaki Shimokawa
Emerging strategies for
treatment of systemic sclerosis
Dinesh
Khanna, Jorg H.W.Distler, Peter Sandner, Oliver Distler
Systemic sclerosis-related
calcinosis
Ariane
L. Herrick, Andrzej Gallas
Original
Research Articles
Gender differences in systemic
sclerosis: relationship to clinical features, serologic status and outcomes
Christine
Peoples, Thomas A.Medsger Jr., Mary Lucas, bedda L. Rosario, Carol A.
Feghali-Bostwick
Potential beneficial role for
endothelin in scleroderma vasculopathy: inhibition of endothelial apoptosis by
type B endothelin-receptor signalling
Yongqing
Wang, Nezam Altorok, Bashar Kahaleh
Effect of endothelin-1
receptor antagonists on skin fibrosis in scleroderma patients from the EUSTAR
database
Suzana
Jordan, Jorg Distler, Britta Maurer, Ulrich A. Walker, Doerte Huscher, Yannick
Allanore, Gabriela Riemekasten, Oliver Distler on behalf of EUSTAR
A randomised controlled trial
of acupressure for the treatment of Raynaud’s phenomenon: the difficulty of
conducting a trial in Raynaud’s phenomenon
Heather
Gladue, Veronica Berrocal, Richard Harris, Pei-Suen Tsou, Gautam Edhayan, Ray
Ohara, Dinesh Khanna
Mycophenolate mofetil
following cyclophosphamide in worsening systemic sclerosis-associated
interstitial lung disease
David
Launay, Anne-Laure Buchdahl, Alice Berezne, Pierre-Yves Hatron, Eric Hachulla,
Luc Mouthon
To read my blog post synopsis
on ‘A randomised controlled trial of acupressure for the treatment of Raynaud’s
phenomenon: the difficulty of conducting a trial in Raynaud’s phenomenon’,
authors, Heather Gladue, Veronica
Berrocal, Richard Harris, Pei-Suen Tsou, Gautam Edhayan, Ray Ohara, Dinesh
Khanna, Click here
Dr Maureen Mayes, Professor at
University of Texas McGovern School of Medicine, co-founder of the World
Scleroderma Foundation, and co-author of ‘The Scleroderma Book’ (3 Aug
2015 publication date), states:
‘A gene on the X chromosome has been identified as associated with scleroderma…
To date there are 3 genes associated with scleroderma susceptibility that are located on the X chromosome - IRAK1, FOXP3, MECP2. IRAK1, FOXP3, are vital for T cell function and MECP2 is associated with DNA methylation’.
‘A gene on the X chromosome has been identified as associated with scleroderma…
To date there are 3 genes associated with scleroderma susceptibility that are located on the X chromosome - IRAK1, FOXP3, MECP2. IRAK1, FOXP3, are vital for T cell function and MECP2 is associated with DNA methylation’.
This is most certainly a
fantastic advancement in the understanding of the scleroderma process.
And certainly, extremely thought provoking, as the statistics show the incidence of scleroderma to be higher in females than males.
And certainly, extremely thought provoking, as the statistics show the incidence of scleroderma to be higher in females than males.
During my 19 year patient
experience, I have taken part in numerous clinical trials for medical research.
I see this participatory opportunity as a duty, as well as a pleasure.
A duty, as I hope to be able to help future scleroderma generations by utilising my body for medical research.
I see this participatory opportunity as a duty, as well as a pleasure.
A duty, as I hope to be able to help future scleroderma generations by utilising my body for medical research.
I have written more about Taking Part in Clinical Trials, here
I have written about the importance of Expert Centres, here
I am extremely grateful to all of those scleroderma patients who assisted in medical research which has enabled the long term outlook of living with a scleroderma diagnosis more favourable than ever before, in the event that an early diagnosis has prevented irreversible internal damage.
I am extremely grateful to all of those scleroderma patients who assisted in medical research which has enabled the long term outlook of living with a scleroderma diagnosis more favourable than ever before, in the event that an early diagnosis has prevented irreversible internal damage.
In my view, to take part in a
clinical trial is a fantastic opportunity, to not only have the possibility of
taking a potential improved treatment for scleroderma, which has been under
years of scrutiny prior to even making it to the clinical trial arena for
humans, but also, to have a thorough assessment and examination with novel
techniques and experimental processes which may not be included in the normal
course of events for purposes of a regular standard monitoring appointment.
There are currently numerous
clinical trials taking place in scleroderma all over the world. A few examples
include:
2. The Scleroderma Patient Centered
Intervention Network (SPIN).
I have participated in SPIN questionnaires online, for a few years now, for purposes of research. I think that the ongoing SPIN research is a fantastic tool for providing understanding into the holistic approach to treating and responding to scleroderma.
If you would also like to participate in the SPIN study, please email me: nicola.whitehill@hotmail.co.uk
I have participated in SPIN questionnaires online, for a few years now, for purposes of research. I think that the ongoing SPIN research is a fantastic tool for providing understanding into the holistic approach to treating and responding to scleroderma.
If you would also like to participate in the SPIN study, please email me: nicola.whitehill@hotmail.co.uk
3. The Royal Free Hospital in London is
currently recruiting participants to look into the clotting factors in
scleroderma patients, Click here
All in all, an investment in global
medical research is essential for the scleroderma patient.
The time taken for the newer biologic innovative medicines to reach the market place needs to be reduced, as does the access to these medicines, which have shown to have a remarkable improvement in disease progression and severity.
The time taken for the newer biologic innovative medicines to reach the market place needs to be reduced, as does the access to these medicines, which have shown to have a remarkable improvement in disease progression and severity.
Time is a luxury for the scleroderma
patient and the rare disease patient alike.
Medical research is making improvements, however, patients are quite literally ‘dying for a cure’.
I am grateful that I am still around to be a scleroderma patient, in the hope that, investment and commitment to accelerate medical research will instigate the light bulb moment needed for a #SclerodermaFreeWorld’ and #RaynaudsFreeWorld' – imagine that!
Medical research is making improvements, however, patients are quite literally ‘dying for a cure’.
I am grateful that I am still around to be a scleroderma patient, in the hope that, investment and commitment to accelerate medical research will instigate the light bulb moment needed for a #SclerodermaFreeWorld’ and #RaynaudsFreeWorld' – imagine that!
And, in the meantime I will continue to
‘Live the dream, Scleroderma Style’, with Hope,
remaining as my best friend and companion.
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.
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.
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
Please DONATE to help
fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.
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.
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.
Last Update: Feb 2020.
The Role of Medical Research
Scleroderma, Raynaud's, Autoimmune Rare Disease.
Scleroderma, Raynaud's, Autoimmune Rare Disease.
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